Development of a novel educational intervention to promote ...

1

Development of a novel educational

intervention to promote case-finding in

chronic viral hepatitis amongst South

Asian migrants- an example of a higher-

risk group

Claire Kelly MBChB MRCP

Department of Clinical and Experimental Medicine, University of Surrey

Supervisors:

Professor Aftab Ala

Professor Simon de Lusignan

Dr Martin Whyte

2

Abstract

Introduction

CVH is a leading contributor to the UK’s liver disease epidemic, but is often

undiagnosed. Guidance recommends case-finding in higher-risk groups in line with the

World Health Organisations call for elimination of CVH as a public health problem.

Migrants from high prevalence areas are one such higher-risk group. However, there

remains no consensus on the optimal case-finding strategy.

Methods

Focus groups (FG) were held with South Asian migrants to explore understanding of

CVH. Analysis of FG data identified key themes, which were used to develop a targeted

educational film.

A feasibility study assessing recruitment of South Asian migrants to view this film, to

promote case-finding for CVH, was completed in South-East England. Dried-blood-

spot testing for CVH was offered after the film. Statistical analysis was performed using

Stata IC V15.

Results

Eight FGs representative across age, gender and education levels were held. Five key

themes were identified: lack of awareness, access and attitude to healthcare, concerns

around testing and stigma. These were used to develop a culturally tailored educational

film shown in community settings to promote CVH testing.

Of the n=219 recruited to view the film, 84% (n=) tested for CVH. Fourteen had

exposure to CVH and all active cases were linked to care.

Discussion

This study showed it is feasible to recruit South Asian migrants to view an educational

film on CVH in community settings. The effectiveness of this intervention in

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promoting testing for CVH (84% tested) has led to plans for a national randomised

controlled trial, demonstrating the importance of targeted case-finding in line with the

WHO plan for CVH elimination. Furthermore, its success means we can recommend

this approach as a model for targeted community-based interventions.

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Table of Contents

ABSTRACT 2

ABBREVIATIONS 7

LIST OF FIGURES 9

LIST OF TABLES 10

SECTION A: INTRODUCTION 12

CHAPTER 1: CHRONIC VIRAL HEPATITIS AND LIVER DISEASE 13

LIVER DISEASE 14 I. UNITED KINGDOM 14

II. WORLDWIDE 16

CHRONIC VIRAL HEPATITIS 16

I. HEPATITIS B VIRUS (HBV) 19

II. HEPATITIS C VIRUS (HCV) 21

III. TREATMENT OF CVH 22

CHRONIC VIRAL HEPATITIS PREVALENCE 23

I. UK PREVALENCE 24

II. WORLDWIDE PREVALENCE 25

III. HIGH RISK GROUPS FOR CVH 28

LIVER DISEASE IN SURREY 29

CHAPTER 2: MIGRANT HEALTH 35

MIGRANT HEALTH 36 I. INTRODUCTION 36

II. UK MIGRATION PATTERNS 37

III. INTEGRATION OF MIGRANTS 39

IV. POLICY AND MIGRATION 43

V. MIGRANTS AND HEALTH 44

SURREY POPULATION 48

CHAPTER 3: HEALTHCARE POLICY AND CASE FINDING IN CVH 53

INTRODUCTION 54 I. SCREENING IN MEDICINE 54

II. SCREENING IN LIVER DISEASE 56

III. EXISTING LITERATURE ON CASE FINDING IN CVH HIGH RISK GROUPS 58

CHAPTER 4: AIMS, OBJECTIVES AND STUDY DESIGN 66

INTRODUCTION 67

STUDY 1 EXPLORING AWARENESS OF CVH IN THE SOUTH ASIAN MIGRANT 67

POPULATION IN ORDER TO DEVELOP A TAILORED EDUCATIONAL (FILM) INTERVENTION

STUDY 2 A NOVEL EDUCATIONAL INTERVENTION TO IMPROVE THE UPTAKE OF TESTING

FOR CHRONIC VIRAL HEPATITIS IN SOUTH ASIANS (SA): A FEASIBILITY STUDY I. STUDY AIM 69

II. PATIENT RECRUITMENT 69

III. TRIAL PROCESSES 69

IV. REGULATORY APPORVALS 70

CONTRIBUTIONS 71

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SECTION B: STUDY 1 A NOVEL EDUCATIONAL INTERVENTION TO IMPROVE

THE AWARENESS OF VIRAL HEPATITIS IN THE SOUTH ASIAN COMMUNITY 72

CHAPTER 5: STUDY 1 METHODS 73

STUDY OVERVIEW 74

AIMS 75 STUDY INCLUSION AND EXCLUSION CRITERIA 75 STUDY STRUCTURE 76

I. COHORT 1: FOCUS GROUPS 76

II. UTILISATION OF FOCUS GROUPS AS A METHOD 78

III. COHORT 2: EDUCATIONAL INTERVENTION DEVELOPMENT 80

IV. QUESTIONNAIRE DEVELOPMENT 82

V. VALIDATION 83

DATA ANALYSIS 83

CHAPTER 6: STUDY 1 FOCUS GROUP RESULTS 87

FOCUS GROUP DEMOGRAPHICS 88

FOCUS GROUP DISCUSSION RESULTS 101

I. LACK OF AWARENESS 102

II. TESTING 106

III. ACCESS TO HEALTHCARE 114

IV. ATTITUDE TO HEALTH 117

V. STIGMA 122

ADVICE ON OUR STUDY 127

CHAPTER 7: STUDY 1 FOCUS GROUP DISCUSSION 131

STUDY 1 DISCUSSION 132

DEMOGRAPHIC SPREAD OF FOCUS GROUPS 132

PAST EXPERIENCE OF CVH 133

FG DISCUSSION OUTCOMES 134 THEME 1: LACK OF AWARENESS OF CVH 134

THEME 2: TESTING 135

THEME 3: ACCESS TO HEALTHCARE 137

THEME 4: ATTITUDE TO HEALTH AND HEALTHCARE PROFESSIONALS 138

THEME 5: STIGMA 140

COMMUNITY ADVICE ON OUR PROJECT 140

CHAPTER 8: FILM DEVELOPMENT FROM FG RESULTS 143

INTRODUCTION 144

DEVELOPMENT OF THE STORYLINE 144

KEY DOMAINS TO BE COVERED IN THE FILM 145

IDENTIFICATION OF PARTICIPANTS FOR THE FILM 146

SECTION C: STUDY 2 A NOVEL EDUCATIONAL INTERVENTION TO IMPROVE

THE UPTAKE OF TESTING FOR VIRAL HEPATITIS IN SOUTH ASIANS: A

FEASIBILITY STUDY 148

CHAPTER 9: PHASE 2 METHODS 149

INTRODUCTION 150

TRIAL DESIGN 150

STUDY OBJECTIVES 150 1. STUDY POPULATION 151

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2. REGULATORY APPROVALS 151

3. RECRUITMENT TO FILM SCREENING 151

4. PRE AND POST FILM QUESTIONNAIRES 154

5. CVH TESTING 154

6. STATISTICAL ANALYSIS 156

CONTRIBUTIONS 156

CHAPTER 10: FEASIBILITY STUDY: RESULTS 157

RESULTS 158

GENERAL CHARACTERISTICS 158 TESTING FOR CVH 158 RESULTS OF QUESTIONNAIRES 159 RESULTS OF CVH TESTING 160

WORD OF MOUTH TESTING UPTAKE 164

CHAPTER 11: FEASIBILITY STUDY: DISCUSSION 166

FILM VIEWING AND TESTING UPTAKE 167

QUESTIONNAIRE DATA 169

RESULTS OF TESTING 171

SUMMARY OF FINDINGS 172

1. UNDERSTANDING OF CVH 172

2. WILLINGNESS TO ENGAGE IN COMMUNITY BASED ACTIVITIES 172

3. CONDUCTING A FEASIBILITY STUDY THAT COULD FORM THE BASIS OF AN RCT 175

COMPARISON WITH EXISTING LITERATURE 177

1. SCREENING UPTAKE 177

2. RECRUITMENT TO CLINICAL TRIALS TO IMPROVE SCREENING UPTAKE 177

3. TYPE OF INTERVENTION 178

4. COMMUNITY BASED TESTING 180

5. PRIMARY CARE RECRUITMENT 181

6. LINKAGE TO CARE 182

7. CONCLUSION 183

STRENGTHS AND LIMITATIONS OF THIS STUDY 183

CHAPTER 12: CONCLUSIONS AND FUTURE WORK 187

PUBLICATIONS FROM THIS THESIS 194

REFERENCES 195

APPENDIX 1: FOCUS GROUP ADVERTISEMENT 210

APPENDIX 2: FOCUS GROUP DEMOGRAPHIC INFORMATION 211

APPENDIX 3: DEMOGRAPHIC INFORMATION FOR STUDY 2 213

APPENDIX 4: QUESTIONNAIRE 215

APPENDIX 5: FULL RESULTS PF PRE AND POST QUESTIONNAIRE 218

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ABBREVIATIONS

Anti-HBc Hepatitis B core antibody

Anti-HBs Hepatitis B surface antibody

ALT Alanine aminotransferase

AST Aspartate aminotransferase

BAME Black Asian and Minority Ethnic

BBV Blood borne virus

CBI Community based intervention

CCG Clinical Commissioning Group

CDC Centre for Disease Control

CVH Chronic viral hepatitis

DAA Direct acting anti-viral agents

DH Department of Health

EU European Union

GP General Practitioner

HAV Hepatitis A virus

HBIG Hepatitis B immune globulin

HBsAg Hepatitis B surface antigen

HBV Hepatitis B virus

HCC Hepatocellular carcinoma

HCV Hepatitis C virus

HIV Human immunodeficiency virus

IgM Immunoglobulin M

IMD Index of Multiple Deprivation

LHW Lay health worker

LSOA Lower-layer super output area

MDT Multi-disciplinary team

NAFLD Non-alcoholic fatty liver disease

NHS National Health Service

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NICE National Institute for Health and Care

Excellence

ODN Operational Delivery Network

PWID People who inject drugs

STP Sustainability and Transformation

Partnerships

SVR Sustained virological response

UK United Kingdom

USA United States of America

WHO World Health Organisation

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LIST OF FIGURES

FIGURE 1: STANDARDIZED UK MORTALITY [1] ...................................................................... 14

FIGURE 2: STANDARDISED LIVER DEATH RATES IN COUNTRIES IN THE EUROPEAN UNION

BEFORE 2004 [1] .............................................................................................................. 15

FIGURE 3: TIMELINE OF VIRAL HEPATITIS DISCOVERY HAV ................................................... 18

FIGURE 4: SUMMARY OF THE COMPLICATIONS OF LIVER DISEASE .......................................... 19

FIGURE 5: WORLDWIDE BURDEN OF CVH ............................................................................... 27

FIGURE 6: MAP OF SURREY ...................................................................................................... 30

FIGURE 7: EMPLOYMENT RATES IN SURREY COMPARED TO ENGLAND [68] .......................... 31

FIGURE 8: HEALTHY LIFE EXPECTANCY AT BIRTH FOR SURREY RESIDENTS COMPARED WITH

ENGLAND AS A WHOLE [68] ............................................................................................ 31

FIGURE 9: LIFE EXPECTANCY AT BIRTH FOR SURREY RESIDENTS COMPARED TO ENGLAND AS

A WHOLE [68] .................................................................................................................. 32 FIGURE 10: AGE OF SURREY RESIDENTS BY GENDER [68] ...................................................... 32

FIGURE 11: BARRIERS TO ELIMINATION OF CVH .................................................................... 34

FIGURE 12: TOP 10 COUNTRIES FOR NON-UK RESIDENTS IN ENGLAND AND WALES

COMPARED OVER TIME [72] ............................................................................................. 39

FIGURE 13: THE DAHLGREN AND WHITEHEAD MODEL OF HEALTH DETERMINANTS [122]..... 48

FIGURE 14: NON-UK BORN POPULATION AS A PERCENTAGE OF ALL USUAL RESIDENTS

2011[72] .......................................................................................................................... 50

FIGURE 15: OVERVIEW OF THE STRUCTURE OF PHASE 1 ......................................................... 86

FIGURE 16: FOCUS GROUP PARTICIPANTS BY AGE AND GENDER ............................................. 90

FIGURE 17: NUMBER OF YEARS FOCUS GROUP PARTICIPANTS HAVE SPENT LIVING IN THE UK

......................................................................................................................................... 90

FIGURE 18: COUNTRY OF ORIGIN OF FOCUS GROUP PARTICIPANTS ........................................ 91

FIGURE 19: MAXIMAL EDUCATIONAL ATTAINMENT OF FOCUS GROUP PARTICIPANTS........... 91

FIGURE 20: RELIGIOUS BELIEF OF FOCUS GROUP PARTICIPANTS ............................................ 92

FIGURE 21: MAIN THEMES EMERGING FROM FG DISCUSSIONS.............................................. 101

FIGURE 22: SUMMARY OF THE OUTCOMES OF FG STUDIES ................................................... 130

FIGURE 23: COMMUNITY IDEAS ON REACHING OUR TARGET POPULATION ........................... 143

FIGURE 24: SUMMARY OF THE FILM MAKING PROCESS ......................................................... 144

FIGURE 25: RECRUITMENT BY TYPE OF SITE. THE TOTAL NUMBER RECRUITED TO VIEW THE

EDUCATIONAL FILM, WITH THOSE EXCLUDED AS NOT MEETING STUDY CRITERIA ARE

SHOWN BY TYPE OF VENUE ............................................................................................ 161

FIGURE 26: CHARACTERISTICS OF THOSE TESTING FOR CVH AFTER VIEWING OUR

EDUCATIONAL FILM. THIS DESCRIBES THE PERCENTAGE TESTED BY GENDER, AGE,

COUNTRY OF ORIGIN AND EDUCATIONAL ATTAINMENT. THE 95% CONFIDENCE

INTERVALS ARE SHOWN. ................................................................................................ 163

FIGURE 27: PROPORTION OF PARTICIPANTS TESTING FOR CVH AFTER VIEWING THE FILM BY

SITE, INCLUDING THE 2 SIDED 95% CONFIDENCE INTERVAL ......................................... 163

FIGURE 28: CASES OF EXPOSURE TO CVH (INCLUDING HBV AND HCV) IN THOSE TESTING

HAVING VIEWED THE FILM WITH PERCENTAGE OF THE OVERALL TESTED COHORT

SHOWN ........................................................................................................................... 164

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LIST OF TABLES

TABLE 1: INTERPRETATION OF SEROLOGICAL MARKERS FOR HBV ........................................ 22

TABLE 2: NICE IDENTIFIED HIGHER-RISK GROUPS FOR HBV INFECTION [3] .......................... 28

TABLE 3: NICE IDENTIFIED HIGHER-RISK GROUPS FOR HCV INFECTION [3] .......................... 29

TABLE 4: ETHNIC GROUPS 2011, SURREY, ENGLAND AND SOUTH EAST [73] ......................... 51

TABLE 5: ETHNIC GROUPS BY AGE 2011 [73] ........................................................................... 52

TABLE 6: FEMALE FG 1 COMMUNITY CENTRE ........................................................................ 93

TABLE 7: FEMALE FG 2 MOSQUE............................................................................................. 93

TABLE 8: FEMALE FG 3 DOMESTIC RESIDENCE ...................................................................... 94

TABLE 9: FEMALE FG 4 COMMUNITY CENTRE ........................................................................ 95

TABLE 10: MALE FG 1 MOSQUE .............................................................................................. 96

TABLE 11: MALE FG 2 MOSQUE .............................................................................................. 97

TABLE 12: MIXED FG 3: LOCAL GP SURGERY ........................................................................ 98

TABLE 13: MALE FG3: LOCAL DOMESTIC RESIDENCE............................................................ 99 TABLE 14: SUMMARY OF DEMOGRAPHIC DETAILS OF FOCUS GROUP MEMBERS ................. 100

TABLE 15: SENSITIVITY AND SPECIFICITY OF THE DBS TEST KIT ......................................... 155

TABLE 16: CHARACTERISTICS OF PARTICIPANTS RECRUITED TO VIEW THE EDUCATIONAL

FILM, SHOWN BY TYPE OF SITE. ..................................................................................... 162

TABLE 17: CHARACTERISTICS OF THOSE ADDITIONAL PARTICIPANTS TESTING FOR CVH

WITHOUT VIEWING THE FILM ......................................................................................... 165

TABLE 18: FEASIBILITY STUDY: SPECIFIC AREAS OF CONCERN AND PROPOSED DETAILS FOR

FUTURE PROPOSED SCALE UP OF RCT ........................................................................... 176

TABLE 19: CHANGE IN PRE AND POST FILM RESPONSES (Q1) ................................................ 218









TABLE 28: CHANGE IN PRE AND POST FILM RESPONSES (Q10) .............................................. 226







TABLE 35: CHANGE IN PRE AND POST FILM RESPONSES (Q17A) ............................................ 231 TABLE 36: CHANGE IN PRE AND POST FILM RESPONSES (Q17B) ............................................ 232

TABLE 37: CHANGE IN PRE AND POST FILM RESPONSES (Q17C) ............................................ 232

TABLE 38: CHANGE IN PRE AND POST FILM RESPONSES (Q17D) ............................................ 233

TABLE 39: CHANGE IN PRE AND POST FILM RESPONSES (Q17E) ............................................ 234

TABLE 40: CHANGE IN PRE AND POST FILM RESPONSES (Q17F) ............................................ 234






TABLE 46: OPINION ON THE USEFULNESS OF THE EDUCATIONAL FILM (Q23) ....................... 238

TABLE 47: EASE OF UNDERSTANDING OF THE INTERVENTION (Q24) .................................... 238

TABLE 48: RELEVANCE OF FILM (Q25) .................................................................................. 238

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TABLE 49: CHANGE IN PRE AND POST FILM RESPONSES (Q26A) ............................................ 239

TABLE 50: CHANGE IN PRE AND POST FILM RESPONSES (Q26B) ............................................ 240







TABLE 57: CHANGE IN PRE AND POST FILM RESPONSES (Q27E) ............................................ 245





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SECTION A: INTRODUCTION

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CHAPTER 1: CHRONIC VIRAL HEPATITIS AND LIVER DISEASE

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LIVER DISEASE

I. United Kingdom (UK)

The United Kingdom is facing an ever-growing burden of liver disease (see Figure 1).

Whilst there have been substantial improvements in the morbidity and mortality for the

majority of chronic diseases in the UK (stroke, heart disease and most cancers) in the

recent past, liver disease stands alone as the exception (Figure 1). Additionally, the rate

of increase of liver disease in the UK is significantly higher than other countries in

Western Europe (Figure 2) [1]. At present it is the third commonest cause of premature

death in the UK with mortality rates in the under 65 age group rising fivefold since the

1970s [1].

Figure 1: Standardized UK Mortality [1]

The major components of the rising burden of liver disease are from public health

conditions which should all be avoidable i.e. alcohol, non-alcoholic fatty liver disease

(NAFLD) and viral hepatitis. There have been campaigns to tackle these issues from

government policy, taxation and planning and development of services including the

flexibility to address local issues. The Lancet commissioned a review of the current

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situation for hepatology in 2014 [1] and has now issued annual updates. Whilst some

of the common aetiologies require population-based interventions (e.g. NAFLD) others

require resources to be focussed on higher-risk groups (e.g. viral hepatitis). Key metrics

from this commission are improving diagnosis of liver disease at an early stage,

improving community access for screening of high-risk people and following on the

World Health Organizations (WHO) call for elimination of chronic viral hepatitis as a

public health concern by 2030 which are all relevant to the work of this thesis.

It is clear from Public Health England data there are considerable regional variations

seen in the UK for liver disease service provision, access to services and patient

outcomes [2]. Therefore, attempts to address these factors require multi-dimensional

input from all disciplines including physicians, policymakers and those who

commission and organise services regionally and nationally. This approach will require

some degree of regional tailoring to address the particular problems encountered as well

as tailoring to specific at-risk populations. This is supported for CVH by the National

Institute for Health and Care Excellence (NICE) Public health guideline [PH43],

Hepatitis B and C testing: people at increased risk of infection [3]. However, they are

unable to offer advice on how this can be achieved.

Figure 2: Standardised liver death rates in countries in the European Union before 2004 [1]

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II. Worldwide

Liver disease is costly in terms of morbidity, mortality (particularly premature

mortality), hospital visits, and premature loss of productivity [4]. Globally, liver

cirrhosis was estimated to be responsible for over one million deaths in 2010, which

equates to approximately 2% of all deaths worldwide, with an estimated further one

million deaths due to liver cancer and acute hepatitis [5]. This is despite the clear issues

with documentation, identification and labelling of liver disease in some parts of the

world.

In 2013, 29 million people in Europe (European Union region) [6] and more than 30

million Americans had liver disease [7], with an estimated 170,000 deaths in Europe as

a result of liver cirrhosis [4].

Hepatocellular carcinoma (HCC) is a recognised complication of cirrhosis, and is

actively screened for, which is responsible for 70-90% of cases of primary liver cancer

[8]. Worldwide, liver cancer is the sixth most common cancer and the second most

common cause of cancer death, with only lung cancer a more common cause of cancer-

related mortality [9]. In 2012 there were 63,500 new cases of liver cancer diagnosed in

Europe and 745,000 worldwide deaths [10].

CHRONIC VIRAL HEPATITIS (CVH)

A large contributor to the burden of liver disease that we face is chronic viral hepatitis

(CVH) i.e. hepatitis B (HBV) and C (HCV) which are the leading causes of liver disease

worldwide and one of the top three causes of chronic liver disease in the UK [3]. An

overview of the discovery of these viruses is shown in Figure 3. They are both

bloodborne viruses and so share risk factors for transmission and it should be standard

practice to test for both simultaneously. HBV can be transmitted vertically and whilst

this can also occur in HCV the risk is smaller (5%) [11]. These hepatitis viruses infect

the liver and cause a process of inflammation and immune activation which can

ultimately result in liver cirrhosis and its complications (Figure 4). Of those with

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chronic viral hepatitis, 30% will have cirrhosis by the third decade after infection with

the resultant risks of hepatocellular carcinoma and recurrent admissions to hospital with

decompensation.

Not all patients infected with HBV and HCV will develop chronic infection, and there

is variation in this chronicity based on the age at acquisition [12]. Importantly though,

both acute and chronic infection may cause few symptoms, and infection therefore goes

unrecognised by patient and clinician alike until end-stage complications develop (70%

of adults and 90% of children may not develop symptoms of acute hepatitis B infection)

[13]. Testing is therefore the only way to identify infection, with effective and accurate

testing strategies available.

Initial infection and early, reversible stages of the disease are often asymptomatic or

non-specifically symptomatic and so go undiagnosed. It has been estimated that 75%

of chronic infections remain undiagnosed [1]. In the UK the higher-risk groups for CVH

infection are people who inject drugs (PWID) including performance enhancing drugs,

incarcerated individuals and migrants from countries with an intermediate or high

prevalence (>2%) of viral hepatitis. In the UK, 95% of new chronic HBV occurs in the

migrant population, having been acquired perinatally in the main [3]. There is evidence

to support the transmission of HCV by community barbers and contaminated blood

products in the developing world [14]. Those who acquire viral hepatitis as children are

more likely to develop chronic infection. This then means the potential for cirrhosis and

its complications in young adult life with resulting morbidity and mortality.

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Figure 3: Timeline of viral hepatitis discovery HAV

(Hepatitis A virus; EM electron microscope; HCV hepatitis C virus; NANBH non A, non B hepatitis;

HDV hepatitis D virus)

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Figure 4: Summary of the complications of liver disease

I. Hepatitis B Virus (HBV)

HBV is not directly cytopathic, with hepatic injury the consequence of immune system

activation and its attempt to clear the infection through a process of hepatic

inflammation (hepatitis), necrosis and fibrosis. This continual cycle of cell injury,

necrosis and attempted regeneration leads to cirrhosis (2-6% annually) [15, 16] and

potentially malignancy, with 0.5% developing HCC [17].

HBV is more infective than HIV, with vertical transmission rates that may be as high

as 90%, coupled with perinatal or childhood acquisition that are the main drivers of the

endemic nature of HBV seen globally. HBV may be also transmitted sexually, as well

as potential risks with the sharing of razors or toothbrushes in some circumstances [13].

Not all affected individuals become chronic carriers, with age a particularly important

risk-factor for HBV, with perinatal exposure leading to chronic infection in

approximately 80-90% of cases, and adult exposure that may lead to chronicity in

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around 5% of cases [12]. Development of liver cirrhosis occurs more frequently in

patients who are older, who consume excess alcohol, those with pre-core mutation,

advanced disease at presentation and those with co-existing liver disease [15]. Around

6% of cirrhotic patients undergo decompensation each year [17]. Patients with chronic

HBV are many times more likely to develop HCC than people who resolve the acute

infection. HCC generally arises 25-30 years after the acute infection [18]. It has been

suggested that HCC develops when hepatocytes are damaged by the immune response

leading to regeneration attempts thus increasing the risk of carcinogenic mutations [18].

HBV is the second most frequent global carcinogen causing 50% of HCC worldwide

[15].

The annual rate of delayed clearance of Hepatitis B surface antigen (HBsAg) is

estimated as 0.5-2% in Western patients but lower (0.1-0.8%) in Asians [19, 20].

HBsAg loss with or without seroconversion may occur spontaneously in 1–3% of cases

per year [21], usually where serum HBsAg levels are low (<1,000 IU/ml) [22]. A

summary of the blood tests for HBV and their interpretation is shown in Table 1.

Hepatitis B vaccination has significantly reduced the risk of transmission worldwide.

The predominant mode of HBV transmission varies across geographical areas that

seems to be related to the background prevalence. In high-prevalence areas vertical

transmission is predominant [23], with horizontal transmission (especially in

childhood) in intermediate-prevalence areas, while unprotected sexual intercourse and

injection drug use predominant in low-prevalence areas.

Vertical transmission rates from HBsAg-positive mothers can be as high as 90% in

babies who do not receive hepatitis B immune globulin (HBIG) and vaccination at birth

[24]. However, prompt immunization with HBIG and vaccination has substantially

reduced the rate of transmission. This does not completely eliminate the risk, however.

There is a particularly high risk of transmission from mothers who are HBeAg positive

and who have a high viral load. By treating these mothers with anti-viral therapy, the

risk of transmission can be reduced.

Whilst risk of acquisition of HBV (and HCV) from blood product transfusion was a

major problem, transmission was significantly reduced after the introduction of

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serologic screening of donors for HBsAg [25] and further reduced by addition of anti-

HBc screening. The World Health Organisation recommends screening with both.

II. Hepatitis C Virus (HCV)

It has been reported that 50-85% of patients infected with HCV become chronically

infected, depending on the population studied and the source of infection [26]. Of those

who are able to spontaneously clear HCV, this usually occurs within 12 weeks of

seroconversion, although longer periods have been described [26]. The mechanism

responsible for the high levels of chronic infection is unclear but both viral and host

factors are likely to contribute.

HCV is transmitted principally by exposure to contaminated blood or body fluids, with

injecting drug use thought to account for up to 90% of cases in the UK [27]. Vertical

transmission is less well defined, but likely to be an important factor globally, with

perinatal transmission risks that may be towards 6% [28], and with household

transmission that is difficult to quantify. The likelihood of chronicity varies with age

with younger people less likely than older people to develop chronic infection as is the

case with HBV. However, 75-80% of exposed individuals develop chronic HCV

infection. The risk of developing cirrhosis in chronic HCV infection is reported to be

around 20% at 20 years, rising to 36-45% at 30 years [29].

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Blood Test Result Description

HBsAg

Anti-HBc

Anti-HBs

Negative

Negative

Negative

Susceptible

HBsAg

Anti-HBc

Anti-HBs

Negative

Positive

Positive

Immune (previous infection)

HBsAg

Anti-HBc

Anti-HBs

Negative

Negative

Positive

Immune (vaccination)

HBsAg

Anti-HBc

Anti-HBc IgM

Anti-HBs

Positive

Positive

Positive

Negative

Acute Infection

HBsAg

Anti-HBc

Anti-HBc IgM

Anti-HBs

Positive

Positive

Negative

Negative

Chronic Infection

HBsAg

Anti-HBc

Anti-HBs

Negative

Positive

Negative

1. Resolved infection (most likely)

2. False-positive anti HBc (i.e. susceptible)

3. Low activity chronic infection

4. Resolving acute infection

Table 1: Interpretation of serological markers for HBV

(HBsAg hepatitis B surface antigen; Anti-HBc hepatitis B core antibody; Anti-HBs hepatitis B surface

antibody; IgM immunoglobulin M)

III. Treatment of CVH

Whilst not all patients with HBV may require treatment initially, highly effective and

cost-effective treatments exist overall for CVH, with a treatment revolution in HCV

that has now been utilised in most developed health systems worldwide. These

developments, in conjunction with HBV vaccination goals have led to global and

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national initiatives calling for CVH to be eradicated as a public health threat by 2030

(with a 90% reduction in new chronic infections, and 65% reduction in mortality) [1,

30]. Treatment is highly efficacious if delivered at the right time, to reduce or prevent

the development of cirrhosis or primary liver cancer with significant individual and

health system savings.

The introduction of direct acting anti-viral agents (DAAs) for hepatitis C (HCV) in

2011 represented a major step-forward in both the sustained virological response rates

(SVR) (>95%) and side-effects of therapy when compared to previous treatment

regimen of interferon and ribavirin. NHS England has commissioned HCV treatment

by networks called Operational Delivery Network (ODN) since July 2015. Treatment

can only be given through MDT working and in accordance with the confines of the

run-rate and the rate card which describes first-line therapy for each genotype and by

disease severity. These networks have increasingly adapted to have a case-finding role

as the list of patients awaiting treatment shortens.

CVH PREVALENCE

The prevalence of HBV and HCV is low in the background UK population but is

disproportionately higher in certain at-risk groups linked to geographic variation,

iatrogenic exposure and risk activity. The health impacts of HBV and HCV can be

severe, with significantly increased morbidity and mortality in those individuals who

progress to end stage liver disease without effective treatment.

There is marked geographic variation in HBV and HCV worldwide, particularly for

HBV, which is endemic in certain parts of the world. Prevalence data is lacking in many

countries, particularly in those with deprived health infrastructure systems, but overall

across Europe reported rates of HBV and HCV infection are between 2-6 times higher

in migrant groups than that seen in the existing population [31]. For both HBV and

HCV, there is uncertainty about the exact number of cases that have been diagnosed or

treated in the UK [32].

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I. UK Prevalence

The most widely used estimates of chronic HBV infection in the UK arise from

historical Department of Health (DH) data in 2002, with prevalence rates of 0.3% and

an estimated 180,000 affected but there is variation in this estimate with some experts

placing the figure closer to 500,000 [33]. Importantly, up to 95% of new chronic HBV

cases in the UK occur in migrant individuals, with most individuals who would have

acquired Hepatitis B in early childhood in the country of birth [3]. Further information

from blood donor testing shows that of the 91 positively identified HBV cases, 60% of

patients were born in Africa or Asia [34].

Chronic HBV predominates in the positive cases identified, and given the

asymptomatic nature of HBV, there is likely to be a large pool of undiagnosed HBV

infections that would not be reached without a targeted testing approach [35]. Unlike

acute HBV, chronic HBV is not notifiable, so calculation of prevalence in the UK is

challenging.

Of the estimated 7,700 UK new chronic hepatitis B cases per year, 96% are infected

vertically or through medical treatment overseas who are UK immigrants (South Asia,

Eastern Europe and Africa). As the majority will be immunotolerant they will be

infectious but not symptomatic so will not necessarily present for health care for some

years.

Over nearly two decades there has been a steady increase in the number of laboratory

confirmed reports of HCV in England with more than five-fold increase between 1996

and 2013 [36]. Previous estimates suggest that around 214,000 individuals are

chronically infected with HCV in the UK, although it is challenging to determine

precise figures [36]. Hospital admissions rose from 608 in 1998 to 2390 in 2012 whilst

deaths rose from 98 in 1996 to 428 in 2012. Annual deaths from HCV in the UK

quadrupled since 1996 [1]. There is a disproportionate rise in morbidity and mortality

in ethnic minorities [37]. The rates of infection amongst recent immigrants is higher

than the background UK population and in Asians reaches 2%. Modelling shows that

provided the prevalence of chronic viral hepatitis in migrants from minority groups was

at least 2% then it was estimated that it would be cost effective to find, treat and test

25

within such communities [3]. Injecting drug use is the biggest risk factor for chronic

HCV in the UK, but HCV is disproportionally higher in migrant groups, particularly in

those from South Asian origin (Indian, Pakistani or Bangladeshi origin) and Eastern

Europe compared to the non-injecting white British population. Data from the sentinel

surveillance programme shows a HCV prevalence rate of 2.7% in Asian/Asian-British

individuals, and although there is no categorisation for those of Eastern European

origin, name recognition software has shown prevalence rates as high as 5.4% in this

groups of patients [27].

Importantly, it is estimated that between 50-75% of patients with HCV are unaware of

their infective status. The majority of chronic HCV therefore exists undetected in the

community, with projected morbidity and mortality that is expected to rise in this

undiagnosed population [1, 27].

II. Worldwide Prevalence

CVH has a global distribution with HBV endemic in some parts of the world [30, 38].

There is marked geographic variation in the prevalence of CVH, with a

disproportionate burden of disease that is seen in many parts of the world (see Figure

5) [31]. Globally, only around 9% of all HBV patients, and 22% of HCV patients are

estimated to have been diagnosed and aware of their disease state, and even by 2015,

only around 8% of these HBV patients and 7.4% of HCV patients had received or

commenced treatment [39].

Hepatitis C is found worldwide. The most affected regions are Central and East Asia

and North Africa [40]. Egypt has the highest prevalence of Hepatitis C in the world

and an estimated 40,000 people a year die as a consequence of the virus. At least one

in ten people aged 15-59 are infected [41]. Approximately 500,000 people die each year

from HCV related liver diseases [40]. In the WHO European Union (EU) region, it is

estimated that 15 million people have Hepatitis C, resulting in approximately 86,000

deaths every year [42], with four million Americans infected [7].

Most European countries report chronic HCV prevalence rates between 0.5 - 2%,

although Italy has rates as high as 3.9%. Egypt has the highest reported chronic HCV

26

rates with rates quoted between 20-30% [12]. One of the largest HCV populations is

thought to be in East Asia and the Indian subcontinent, with an estimated 100 million

HCV positive individuals in this region, and with prevalence rates of 4.9% reported in

Pakistan [43].

It is estimated that approximately two billion people worldwide have evidence of past

or present infection with HBV, with around 350 million people having chronic

Hepatitis B [44]. In the World Health Organization (WHO) EU region, it is estimated

that 13.3 million people have chronic Hepatitis B [42] with over one million Americans

infected [7]. Hepatitis B results in an estimated 36,000 deaths every year in Europe

[45] with roughly 600,000 deaths worldwide [46, 47]. The prevalence of chronic HBV

ranges from <2% in low-prevalence areas (e.g. United States, Canada, Western Europe)

to 2-7% in intermediate-prevalence areas (e.g. Mediterranean countries, Japan, Central

Asia, Middle East, and parts of South America) to ≥8% in high-prevalence areas (e.g.

Western Africa, South Sudan) most of these infections arise through vertical

transmission [15] with almost half (45%) of the global pandemic residing in these

countries [17, 46-48]. The wide range in the prevalence of patients with chronic HBV

in different parts of the world is largely related to differences in the age at infection,

which is inversely related to the risk of chronicity. The rate of progression from acute

to chronic HBV infection is approximately 90% for perinatally acquired infection [24],

20-50% for infections between the age of one and five years [49, 50], and less than 5%

for adult-acquired infection [49]. In areas of low prevalence, many of the patients who

have chronic HBV were born in areas where the prevalence is higher [51-56].

In 2013, chronic viral hepatitis was the seventh leading cause of death worldwide [57].

Most mortality was attributable to hepatocellular carcinoma and cirrhosis. Globally, the

total number of deaths due to HBV in 2013 was estimated to be 686,000 [58]. In the

United States, the rate of HBV-related mortality from 2009 to 2013 was

0.5 deaths/100,000 population [59]. In China, the age-standardized death rate for HBV-

related liver cancer and cirrhosis in 2013 was 10.95 and 4.91 per 100,000 people,

respectively [60].

The global death toll seen due to CVH is rising, and is higher than that reported with

HIV, and comparable to that seen for tuberculosis; with CVH the only one of these

conditions with a mortality rate that continues to rise [30, 38].

27

Figure 5: Worldwide burden of CVH

The World Health Organisation released a call for the elimination of chronic viral

hepatitis as a public health threat by 2030 in line with the Agenda for Sustainable

Development [61]. This reflects the fact that CVH is a neglected cause of worldwide

mortality that is increasing, and greater than global deaths from malaria and

tuberculosis [62]. Part of this call is to improve the current rate of diagnosis from a

baseline in 2015 of <5%, to 30% by 2020 and 90% by 2030 [63]. There are, however,

28

barriers to elimination as shown in Figure 11 and it is patient awareness and access to

testing that this thesis aims to address.

III. High Risk Groups for CVH

NICE guidelines recognised higher-risk groups for both HBV and HCV infection in the

UK Whilst most risk factors are the same for both viruses, there are some differences.

There are also differences in other Western countries such as those provided by the

centre for disease control (CDC) in America [64].

HBV Higher-Risk Groups

People born or brought up in a country with an intermediate or high prevalence (2%

or greater) of chronic HBV. This includes all countries in:

- Africa,

- Asia,

- the Caribbean,

- Central and South America,

- Eastern and Southern Europe,

- the Middle East and

- the Pacific islands.

Babies born to mothers infected with hepatitis B.

People who have ever injected drugs.

Men who have sex with men.

Anyone who has had unprotected sex, particularly:

- People who have had multiple sexual partners

- People reporting unprotected sexual contact in areas of intermediate and

high prevalence

- People presenting at sexual health and genitourinary medicine clinics

- People diagnosed with a sexually transmitted disease

- Commercial sex workers

Looked-after children and young people, including those living in care homes

Prisoners, including young offenders

Immigration detainees

Close contacts of someone known to be chronically infected with HBV

Table 2: NICE identified higher-risk groups for HBV infection [3]

29

HCV Higher-Risk Groups

People who have ever injected drugs.

People who received a blood transfusion before 1991 or blood products before 1986

when screening of donors for HCV infection, or heat treatment for inactivation of

viruses were introduced

People born or brought up in a country with an intermediate or high prevalence (2%

or greater) of chronic HCV. This includes all countries in:

- Africa,

- Asia,

- the Caribbean,

- Central and South America,

- Eastern and Southern Europe,

- the Middle East and

- the Pacific islands.

Babies born to mothers infected with HCV.

Prisoners, including young offenders

Looked-after children and young people, including those living in care homes

People living in hostels for the homeless or sleeping on the streets.

HIV positive men who have sex with men.

Close contacts of someone known to be chronically infected with HCV

Table 3: NICE identified higher-risk groups for HCV infection [3]

LIVER DISEASE IN SURREY

Surrey is a county in the South East of England, with a population of around 1.2 million

people (see Figure 6) [65]. It has a relatively older population (see Figure 10). It is an

affluent area, but with pockets of relative deprivation. In the UK the Department for

Communities and Local Government provide deprivation data by region [66]. The

overall index of multiple deprivation (IMD) is calculated based on multiple domains

(Income Deprivation, Employment Deprivation, Education, Skills and Training

Deprivation, Health Deprivation and Disability, Crime, Barriers to Housing and

Services and Living Environment Deprivation). Surrey is ranked 150 (1=most

deprived, 152=least deprived).

30

The Office for National Statistics produced lower-layer super output areas (LSOAs)

which are small areas designed to be of a similar population size with an average of

approximately 1500 residents or 650 households. There are 32,844 LSOAs in England.

None of the LSOAs in Surrey are within the most 10% deprived nationally [66]. Surrey

has a health deprivation and disability rank of 142, again none of the LSOAs in the

most deprived 10% nationally [66]. The employment rate is above the national average

(75.4%) at 78.8% of the population aged 16-64 years (see Figure 7), with only 0.9% of

the 16-64 years proportion of Surrey claiming unemployment benefits (national

average 2.7%) [67]. Surrey residents have a higher healthy life expectancy at birth (see

Figure 8) and life expectancy (see

Figure 9) [65].

31

Figure 6: Map of Surrey

Figure 7: Employment Rates in Surrey Compared to England [68]

32

Figure 8: Healthy Life Expectancy at Birth for Surrey Residents Compared with England as a Whole

[68]

Figure 9: Life Expectancy at Birth for Surrey Residents Compared to England as a Whole [68]

33

Figure 10: Age of Surrey Residents by Gender [68]

Public Health England have issued a document that describes the variation in risk

factors and healthcare across different levels from local authority, Clinical

Commissioning Groups (CCGs), and local Government offices [2]. This reveals that

the rate of years of life lost in people aged 1-64 years from chronic liver disease

including cirrhosis is not significantly different in Surrey than the rest of England [2].

In all Surrey CCG areas, there is significantly lower rates of admission to hospital (at

least once) for cirrhosis in people aged 18 years and over compared to England as a

whole.

Whilst not able to provide details for Surrey specifically, the South East area has

significantly lower laboratory confirmed HCV tests and new diagnoses of HBV in

pregnancy than England as a whole. Acute HBV rates were not significantly different

in the South East as compared to the whole of England [2].

The rate of hospital admissions for HCV related end stage liver disease or HCC is

significantly lower in Surrey Heartlands but significantly higher in East Surrey and

Sussex than the rate for England [2]. The mortality rate in all Surrey was not

34

significantly different from England rates [2]. The same metrics for HBV were also

described and neither hospital admissions nor mortality were significantly different

from England rates.

For markers of advanced chronic liver disease, regardless of aetiology, Surrey Downs

had a significantly higher percentage of oesophageal varices admissions as emergencies

(North West Surrey no significant difference, East Surrey no data) and North West

Surrey and Surrey Downs had significantly higher percentage of admissions for

paracentesis done as an emergency (Guildford and Waverley significantly lower, East

Surrey no significant difference) [2].

35

Figure 11: Barriers to elimination of CVH

Barriers to elimination

Poor test access & uptake

Inadequate funding for

public health campaigns

Stigma of diagnosis

Lack of awareness & knowledge in

healthcare professionals

Lack of patient

awareness

Lack of treatment

access

Long wait time for access to treatment

Harm reduction

availability

36

CHAPTER 2: MIGRANT HEALTH

37

MIGRANT HEALTH

I. Introduction

There is no definition in law as to what constitutes a migrant. The variety of definitions used

in healthcare policy and research include foreign nationals, people with foreign citizenship,

asylum seekers and those moving temporarily or permanently. Whilst the number of people

seeking asylum are a small proportion of the overall entrants to the UK, they attract a

disproportionate amount of public, media and policy attention. In the mass media and in some

areas of research the terms foreigner, migrant and immigrant are used interchangeably.

In the UK, the Office for National Statistics (ONS) uses the United Nations definition of a

long-term international migrant i.e. “A person who moves to a country other than that of his or

her usual residence for a period of at least a year so that the country of destination effectively

becomes his or her new country of usual residence”. However, this definition, like others, has

limitations in estimating net migration and has implications for policy as discussed below.

This variation in terminology as to what or who a migrant is can be important in public debate

where migrants are equated with minority groups, both ethnic and religious, as well as asylum

seekers and these terms can be used interchangeably particularly by the mass media [69]. It

also has an effect on migration data and analysis which in turn informs public debate and

policy. Those described as migrants in the UK can include people who are British citizens or

who have the right to work and access public services in this country and hence are not subject

to immigration control, for example EU citizens have not been limited by immigration law

(prior to Brexit).

Definitions also affect data, including measures of both the number of migrants in the country

at any given time and the flow of people moving into or out of the country. Current official

government estimates include several groups that would be excluded under other definitions.

In this thesis, I use the term ‘migrant’ to refer to those people born abroad regardless of whether

they have become UK citizens.

38

II. UK Migration Patterns

The UK has a history of migration from its former colonies, with many individuals who started

to arrive in the UK from the 1950’s to 1960’s from the Caribbean and South Asia. Immigration

to the UK has doubled since the 1990’s, and England and Wales have a higher proportion of

foreign-born residents in comparison to similar sized European countries [70]. In the UK, the

annual population survey showed the foreign-born population increased from approximately

5.3 million in 2004 to approximately 9.3 million in 2018 [71]. From 2008-2018 the number of

non-EU migrants outnumbered EU migrants while the number of EU migrants increased more

rapidly [71]. Despite this, EU migrants were less likely to become British citizens than non-

EU migrants, but this may be related to the fact that at the time, EU citizens have right to work

and access public services in other EU member states.

By 2010 the Office for National Statistics estimated that of the UK population, 4.76 million

people (7.7%) were born outside the EU and 2.24 million (3.6%) were born in another EU

member state [72]. Census data provided by the Office of National Statistics in 2011 for

England and Wales shows that there has been an increase in minority ethnic groups, alongside

a reduction in people who identify themselves as white British [73]. Whilst the immigration

rates overall are increasing, review of the country of origin of these migrants has shown people

from South Asia continue to be one of the predominant sources of immigration over time (see

Figure 12). More latterly, there has been a substantial increase in Polish born people migrating

to the UK with increases (but less total numbers) also from those born in Nigeria and South

Africa. Over the same timeframe, there has been a reduction in those coming from the Republic

of Ireland (see Figure 12) [72].

Once migrant communities are established, they can facilitate further migration by providing

a source of support and information for any new arrivals. It is believed that this establishment

of migrant communities throughout the UK has been a source of encouragement to others in

their native countries and accounts, at least in part, for the increasing levels of migration seen

from areas such as South Asia and Poland over time as these communities become established

[74].

Non-EU immigration has been more stable than EU immigration, particularly since 2004. It

may be this is largely due to the free movement rules of EU member states that means people

can respond to changes in the political and economic climate both in the UK and their country

39

of origin such as the economic crisis in the UK in 2008, the Eurozone crisis, and the EU

referendum. Following the referendum, EU immigration fell sharply whilst non-EU

immigration increased steadily [75].

However, changes in policy in immigration rules in 2010-2012 saw a fall in non-EU migration

but these changes had been reversed by 2018 where the main reasons for immigration to the

UK were employment, particularly in the health care sector, and study [76]. Following the

2016 referendum result, employment related immigration decreased due to a decline in EU

immigration. However, it is uncertain what the ongoing consequence of the UK leaving the EU

will be in respect to migration patterns and particularly what policy or legal changes will ensue

as well as the economic climate in the UK post EU withdrawal [77].

In 2019, people born outside the UK made up an estimated 14% of the UK’s population, or 9.5

million people. Compared to the UK born, migrants are more likely to be of working age (26-

64 years old) which reflects the two major reasons for immigration (employment and study).

London has the largest number of migrants comprising 35% of the UK’s total foreign-born

population.

As would be suggested from the discussion in nomenclature above, the reasons for migration

are many and varied, with the patterns fluctuating over time. Whilst there has been an

association between migration and the labour market, in reality the patterns of migration are

more complex than this. Migrant groups are diverse, and include migrant workers, students,

refugees, asylum-seekers, family re-union migrants, trafficked persons and undocumented

migrants [78]. In recent times the refugee crisis has been a significant factor due to the

displacement of people due to war and persecution with the United Nations High

Commissioner for refugees noting forcible displacement of 79.5 million people by the end of

2019, (including those internally displaced) [79]. Developing countries are hosting more of

these refugees than ever before, but the pressures of migration on the EU from these conflicts

as well as existing migrant communities are substantial, with no anticipated easing in the

complex migration trends in sight [80]. In 2016, an estimated 362,000 refugees crossed the

Mediterranean Sea attempting to reach Europe [79].

40

Figure 12: Top 10 countries for non-UK residents in England and Wales compared over time [72]

III. Integration of Migrants

Social links between migrants and the native population can indicate the extent to which

society is divided by country of origin. However, integration of migrant groups into society is

complex, not least of all due to the variety of definitions used to characterise it as well as lack

of data collection particularly in new migrant communities. Furthermore, an apparent lack of

social contact between groups could be influenced by multiple factors including

discrimination, geographical and social distance (e.g. non-overlapping work locations) [81].

There have been attempts to determine public perception of social cohesion in their local areas

and migrants generally report similar levels of cohesion as the UK-born population [82]. In

fact, Indian and Pakistani born migrants living in both low and high income areas are

significantly more likely to report higher levels of social cohesion compared to the UK-born

people [82]. Whilst initially, migrants participation in voluntary organisations and leisure clubs

is lower than those UK born people, this participation increases with time spent in the UK and

0

100000

200000

300000

400000

500000

600000

700000

800000

India Poland Pakistan Republic of

Ireland

Germany Bangladesh Nigeria South

Africa

United

States

Jamaica

Top Ten Countries for non-UK Born Residents in England and Wales

2001 Census 2011 Census

41

therefore may be related to familiarity with these organisations and confidence in factors such

as language [82].

Generally, people identify themselves in various domains such as national, ethnic and religious,

but migrant identification is more focused on ethnic and national identity [82]. Some people

argue that this national identity will hinder integration in the new country and thus are

proponents of identifying with the country now lived in, but studies have shown that people

can jointly identify with both in parallel [83, 84].

The term integration is not universally adopted as it can suggest migrants are separate and

different, projecting a sense of other and accordingly creating a division [85]. However, when

used it often describes a complex multifaceted process rather than a single event in time. It can

be described as participation social interaction, cultural practices, civic participation (e.g.

volunteering) and participation in the new countries institutions e.g. education. However, all

these factors are fluctuant over time depending on life circumstances and are inter-related, for

example, participation in social events can foster a sense of belonging but may require language

skills [84, 86]. There is some public and media perception that migrants are not willing to

integrate e.g. not mixing outside their own communities without necessarily identifying the

barriers that can be faced.

Central government policy to foster integration has really only occurred for refugees, however,

some government policies have included migrants e.g. discrimination legislation. Whereas

other EU member states targeted new arrivals as priority for policy that encourages and enables

integration. In 2017 the All Party Policy Group on Social Integration described our policy

approach as “remarkably non-interventionist” particularly when compared to other EU states.

Whilst there is no national UK policy framework on integration, there is a history of integration

policy beginning in the 1960s, directed at migrants from Commonwealth countries. This was

based on the significant hostility these migrants faced at the time and focused on

discrimination, incitement to racial hatred and on ways to develop better community relations.

A Refugee Integration Strategy (2000) was designed to enable refugees to maximise their

potential and become equal members of society by accessing jobs, accommodation and

healthcare [81]. The following year (2001) wide scale disturbance in Northern England

triggered the government to adopt a community cohesion framework to address tensions

42

between ethnic minorities, but not specifically migrants, and white people but this focussed on

assimilation rather than integration as delivered in a speech by the Prime Minister at the time,

Tony Blair [87].

The next major policy development came in 2012 where a strategy paper called ‘Creating the

Conditions for Integration’ described integration being achievable by people contributing at

neighbourhood level together. A green paper followed in 2018 and a multi-department action

plan for England in 2019. The emphasis here was to focus on the distinction between

assimilation and integration drawing attention to the fact that everyone has a role to play in

making communities where all people coexist together based on “shared rights, responsibilities

and opportunities”. A key issue raised in debate was whether this what central or local

government responsibility.

Whilst migrants are granted some basic rights on their arrival to the UK (as per the European

Convention on Human Rights) other day to day freedoms (e.g. right to work, family reunion

and entitlement to social security) are dependent on immigration status which in turn relates to

nationality and length of stay. This variability in entitlements can make it more challenging for

employers, statutory agencies and migrants themselves to know what their restrictions are. It

could be said that these immigration policies are therefore a challenge to integration themselves

by marking out differences between migrant groups and well as between migrants and the

native population. Generally, the focus has been on the migrants themselves to integrate rather

than identifying and ultimately countering the barriers migrants face. There is a lack of data on

interventions for migrants to integrate to aid government, either local or central, in developing

policy. In fact, definition of what the outcome measures for integration would be could

potentially lead to greater ownership of the problem at all levels (societal, government and

third sectors) [88].

Tensions in society with a particularly negative view of migration has been seen in the last few

years, although there are many cases where migration and ethnicity are conflated. This has

occurred at a time when political rhetoric has been more negative about migration rates. Whilst

there has been some emphasis on the contributions of migrants to society, the overall

impression is one of limiting migration. The consequences of this more negative perception of

migrants may well be seen in integration but also in the known health inequalities that migrants

experience, and the broader socio-economic, cultural and environmental conditions that effect

43

health and healthcare engagement in migrant communities (see Figure 13). These poorer

outcomes occur at a socio-economic level, with regard to unemployment and over-qualification

compared to native born individuals across Europe [89]. Lower income levels are also

documented for non-EU migrants, with the resultant increased risks of poverty, social isolation

and overcrowding. First generation migrants are more at risk from these outcomes, with the

lack of established support they tend to have and is potential even further risk to those new-

migrant populations who will lack existing communities to embed into [89]. Whilst migrants

are heterogeneous, with marked variation in existing socio-economic status as well as social

support, the population risk for these groups overall is higher for the variety of factors that

influence health and wellbeing that are shown in Figure 13.

As outlined above, there are multi-faceted reasons why migrants can experience

discrimination. Some of this discrimination is akin to that faced by UK born ethnic minorities

and so tied to race, whereas others are related to being foreign born e.g. accent [90]. In 2018,

non-EU born migrants were twice as likely to describe themselves as members of a group that

faces discrimination because of nationality, religion, language, race or ethnicity, compared to

EU-born migrants (19% v 8%) [91]. Although there was an increase in perceived

discrimination in EU-born migrants around the time of the EU referendum in 2016 when public

concerns over immigration were the top issue for voters [92, 93]. This increase in perceptions

of hostility and discrimination among EU migrants during and after the EU Referendum, led

to a worsening of their mental health [94]. Overall, rates of perceived discrimination in

migrants in the UK was similar to those rates seen in the EU [91]. Whilst most foreign born

people living in the UK found it welcoming for migrants, 13% had been insulted because of

their ethnicity, nationality, religion, language or accent [91]. Studies have shown that job

applicants from minority backgrounds, including migrants, face discrimination [95]. It should

be noted that migrants from less developed countries are often perceived more negatively than

those from developed nations, regardless of their personal characteristics [96]. However, not

all discrimination against migrants is related to race, with low-skilled migrants being viewed

less favourably than higher skilled migrants [97, 98].

Minorities from predominantly Muslim countries (e.g. Pakistan) also experience

discrimination due to their religion, with data showing hostility towards Muslims in Western

countries [99]. Previous research has found that hostility can also come from liberal supporters

of immigration, who perceive Islam as a threat to European liberal values [100].

44

Public perceptions of migration in the UK in 2019 remain a source of division, with around

39% opining the level of immigration should stay about the same, while 44% said they would

like immigration to be reduced [91]. However, since the EU referendum, there has been a

change in immigration no longer being mentioned as the most important issue in the UK [91].

There was an apparent hierarchy with highly skilled preferred to the unskilled, and those from

culturally similar countries (e.g. Australia) preferred over others perceived to be more

culturally distant (e.g. Nigeria). This preference for highly skilled migrants was again noted

where members of the British public were asked what criteria should be applied to incoming

migrants, skills were highly regarded, but less emphasis paid to skin colour and religion [101].

Overall though there is some suggestion that attitudes to migration are becoming less absolute

after the EU referendum from both leavers and remainers [91]. It is difficult to be sure about

what underpins this change in attitude.

It has been shown that experiencing discrimination affects achievement, sense of belonging

and mental health [102, 103]. Overall, a groups perception of unequal treatment is an important

factor in their health and wellbeing as well as being a measure of social cohesion and a sense

of not being welcome or accepted has implications for integration [104, 105].

IV. Policy and migration

Government policy is an important driver in migration, and indeed determines the rules around

movement of people (non-EU and non-UK citizens) but can also inform public opinion around

patterns of migration. However, overall influences around migration are multifactorial, with

economic and employment the predominant drivers of international migration [106]. In the

UK, work is the most common reason for travel by non-UK citizens, although in non-EU

individuals study predominates, but this may be more directly related to government policy on

visa restrictions for non-EU migrants rather than the desire of these groups. Indeed, in the

majority of cases UK citizenship is granted in relation to work, meaning economic issues and

employment key aspects in UK migration [106].

In order to estimate net migration, the ONS uses data from the international passenger survey

(IPS). The UN definition of long-term migrant used by the ONS is relevant to policy, as

reducing net migration is a key policy objective of the current government, and the ONS

45

estimate is the usual measure cited in policy discussions. However, measuring migration

according to this definition poses several challenges. Firstly, it is not known how long any

individual who arrives in the UK will stay as IPS data are based on respondents’ intentions

only. In calculating estimates of long-term international migration (LTIM), the ONS attempts

to adjust for those who stay longer or depart sooner than intended but this is only an estimate

and is also based on self-reports. Home Office data gathered from immigration control

processes can determine how long migrants are entitled to stay but cannot tell us whether they

will depart early or extend their stay. Moreover, since data on departures from the UK are not

available, it is not possible to determine actual length of stay retrospectively. Furthermore,

LTIM estimates include asylum seekers in counts of migrants entering the UK, while

attempting to adjust the total numbers to exclude those who stay for less than a year and thus

do not qualify as migrants defined by length of stay. Public opinion surveys on immigration

attitudes reflect and may add to this confusion. Some surveys do not define their terms, leaving

respondents to answer questions based on their own implicit definitions or use definitions that

are distinct from the ONS meaning e.g. those who come to the UK to settle but which fit

dictionary meaning of the term migrant. With such a variety of definitions there is implications

for public and media debate on migration, indeed public opinion surveys show that members

of the public who want to see immigration reduced are more likely to focus on certain types of

migrants, especially so-called illegal immigrants but also asylum seekers, extended family

members, and low-skilled workers. Other types of immigrants such as students and high-skilled

workers also are counted in immigration statistics but have been of less concern in public

opinion.

In light of our exit from the EU a new immigration bill (Immigration and Social Security Co-

ordination (EU Withdrawal) Bill is before Parliament, and if this becomes law freedom of

movement will end, making EU citizens subject to the same immigration rules as the rest of

the world. Transition arrangements over social security measures still need to be clarified.

V. Migrants and Health

Migrant groups can face a higher burden of disease, compounded by inequalities in healthcare

access. Migrant health is complex, and related to multiple determinants across socioeconomic,

cultural and environmental conditions as well as individual characteristics and considers the

relation of these to both the host nation and country of origin [107]. Health disparities are

46

widely reported in migrant communities, with ethnicity often used as the identifying

characteristic in disease prevalence and health inequality studies. New migrant groups are

underrepresented in these studies, as ethnicity definitions are usually tailored toward the

existing minority communities [108].

Avoidable inequalities in the health status of migrants, as well as the quality and accessibility

of services for migrant groups have been reported across the European WHO region. These

inequities have been related to the social determinants of health, and social exclusion in

particular, at individual and community levels excluded from access and engagement in health

services. This social exclusion itself is complex but perhaps related to imbalance of power

across economic, political, societal and cultural grounds, with individual or institutional

discrimination further detracting from the individuals and communities ability to manage their

health [107].

Socioeconomic status is an important consideration and likely co-factor in health inequalities

in migrant groups, and lower socioeconomic status in arriving migrants would account for risks

including overcrowding, nutrition and poor sanitation, but there is clearly more to health

inequities than socioeconomic status alone [109], with individual risks, cultural practices that

may be associated with disease or wellbeing, the background prevalence of disease in the

country of origin, as well as an additional socio-economic burden that many migrant groups

face on arrival to the host country that is independent of their background and educational

status [89, 107, 110]. This model, the social determinants of health, is used and advocated by

the WHO (see Figure 13) to understand the multi-faceted domains in which healthcare

inequalities can exist. The factors described above regarding migration add further complexity

and relationship between the listed factors and migration specific features such as status of the

migrant, factors relating to country of origin and host country.

Accessible health services are often lacking for migrant communities, with a lack of awareness

of existing facilities, and a mismatch in the provision of language and culturally appropriate

services. Perceptions towards healthcare are known to vary in migrant groups, and newer

communities may be unfamiliar with preventative strategies in healthcare or broader models

of Western healthcare provision. It may also be that the migration process itself influences

healthcare access and uptake. Multiple factors are likely to influence healthcare access and

uptake in migrant communities, with previous reports that identify six key factors to be

47

considered: the legal entitlement of migrants, knowledge and awareness of the healthcare

system in the new country, previous experiences of healthcare, language and cultural barriers,

health beliefs and attitudes, as well as the structure of the healthcare system in the host country

[111]. Migrant groups across Europe and the UK are heterogeneous in nature, but are generally

younger than the native population, and most migrant groups are healthy and active

contributors to society [71, 112]. Healthier migrants are also more likely to remain in the new

country creating a so-called Healthy Migrant Effect. Despite the initial health advantage of the

migrant population, their health tends to converge to that of the UK born as their time spent in

the UK increases [113].

There are health issues that are identified more frequently in some migrant groups. Migrant

health is determined by multiple factors such as exposure in the country of origin (e.g.

infectious disease), cultural practices, socioeconomic factors as well as environmental risk-

factors in the host country on arrival (e.g. smoking, diet, alcohol or drug-use). There are also

differences in health perception, and service utilisation in some migrant groups. Language

barriers are important in healthcare delivery, however culture can also be a significant

influence [114]. Whilst it is known that those with higher socio-economic status (e.g. income)

have better health outcomes, there are complex reasons for this beyond pure economics [115].

Some low-skilled jobs increase the risk of experiencing health problems [116] because of their

physical nature and also poor working conditions (e.g. cleaning or construction), or because

they are lower paying meaning people are less able to purchase goods and services to improve

their health [117]. In addition, people that are unable to move out of low-skilled and low-paid

jobs are more likely to experience chronic stress due to their socioeconomic situation [118],

which ultimately affects their overall health. The corollary may also be true with poor health

potentially affecting ability to work. Both migrants and the UK born employed in high-skilled

jobs are less likely to say they have a limiting health problem than those in low-skilled jobs.

Reviews looking at ethnic minority use of NHS services illustrate the presence of access

problems [119], and that these are not solely socioeconomic. Cultural differences (patients’

health and perception of disease as well as their health behaviours) are likely to last over

language issues in migrant groups. These factors, therefore, will require acknowledgement and

addressing ideally with the help of those members of the particular culture for the successful

development of an intervention.

Successful implementation of public health interventions to tackle health inequalities depends

on behaviour change. This requires understanding of the behaviours to be changed, the drivers

48

to maintain the current behaviour, barriers and facilitators to change and the expertise to

develop strategies to achieve change based on this understanding [120]. The evidence base for

interventions of this nature are largely centred around screening programmes. Most of the UK

data is therefore largely based around screening for malignancy. Whilst there is much data on

the factors that influence screening uptake the literature is less conclusive over the

effectiveness of interventions, particularly those in particular groups in the population rather

than in the population in general.

Migrant groups do however face inequalities in healthcare access in the host country, as well

as altered patterns of healthcare engagement that can leave this community vulnerable [107],

in addition to a higher burden of disease risk that may exist from their native environment.

First generation migrants, and new migrant communities may be at even greater need with

regard to disease burden compounded by uncertainty in how to reach these new communities

in healthcare engagement [121].

Migrant communities face health vulnerabilities, including the global risks of CVH that require

the delivery of effective testing strategies to understand and manage these risks, which will

otherwise remain undetected until complications develop. At the same time, migrant

communities are facing increasing anti-migrant sentiment, expressed at the political and social

level, coupled in the UK with uncertainty related to EU withdrawal.

49

Figure 13: The Dahlgren and Whitehead model of health determinants [122]

SURREY POPULATION

As described in chapter 1, Surrey is a relatively affluent area in the South East of England.

However, the South East of England generally has high rates of immigration (see Figure 14)

and Surrey particularly has close links to London with work and study opportunities.

Surrey is less diverse than England as a whole with 83.5% of the population reporting their

ethnic group as white British compared with 79.8% in England [73]. However, in the South

East as a whole 85.2% were recorded as white British [73].

More people in Surrey (6.9%) were recorded in other white ethnic groups than in England

(5.7%) with fewer (9.6% compared with 14.6%) in all other ethnic groups [73].

The majority of the population (90.4%), reported their ethnic group as white in the 2011 Census

[73]. Within this group, white British was the largest (83.5%), followed by “any other white”

(5.5%). Indian was the next largest single ethnic group (1.8%) followed by Pakistani (1.0%).

However, those categorised as “other Asian” accounted for 1.7% of the population in total.

50

As compared to the previous census in 2001, Surrey appeared more ethnically diverse,

however, it is notable the wording of the question changed from cultural to ethnic background.

While white continued to be the majority ethnic group people identify with, it decreased over

the last decade. In 2001, the white ethnic group accounted for 95.0% of the population. This

decreased between the 2001 and 2011 Censuses to 90.4%. Within the white ethnic group, white

British had decreased from 89.3% in 2001 to 83.5% in 2011. There was an increase in all other

minority ethnic groups with a big increase in people reporting their ethnicity in “other Asian”

groups. Across the districts in Surrey, Woking was the most ethnically diverse area, and

Waverley the least.

51

Figure 14: Non-UK born population as a percentage of all usual residents 2011[72]

52

Surrey South East

England

England

White British 83.5% 85.2% 79.8%

All other white 6.9% 5.4% 5.7%

Mixed/Multiple ethnic groups 2.1% 1.9% 2.3%

Asian/Asian British: Indian 1.8% 1.8% 2.6%

Asian/Asian British: Pakistani 1.0% 1.2% 2.1%

All other Asian groups 2.9% 2.3% 3.1%

Black/African/Caribbean/Black British 1.1% 1.6% 3.5%

Other ethnic groups 0.8% 0.6% 1.0%

All non-white ethnic groups 9.6% 9.4% 14.6%

Table 4: Ethnic groups 2011, Surrey, England and South East [73]

The older population is less diverse than the younger cohorts. 92.5% of people aged 65+ are

white British with just 2.7% in non-white ethnic groups. Other white ethnicities are most

dominant in the 25-64 age group (8.4%). The highest proportion of Asian ethnicities (other

than Indian and Pakistani) is among young adults aged 16-24 (4.5%).

In summary, whilst the ethnicity in Surrey is predominantly white, it does sit within the South

East of England geographically where immigration is generally high. From census data, the

proportion of the population identifying as white is falling, with a rise particularly in the

number of people identifying as Asian (of any subtype). Even within Surrey itself, there is

variation across its boroughs in terms of their diversity ethnically.

53

Age

0-15

Age

16-24

Age

25-64

Age 65+ All

people

White British 81.4% 80.9% 81.9% 92.5% 83.5%

All other white 5.1% 6.1% 8.4% 4.8% 6.9%

Mixed/Multiple ethnic groups 5.2% 3.1% 1.3% 0.3% 2.1%

Asian/Asian British: Indian 1.9% 1.6% 2.1% 0.7% 1.8%

Asian/Asian British: Pakistani 1.5% 1.3% 0.9% 0.3% 1.0%

All other Asian groups 2.9% 4.5% 3.2% 0.8% 2.9%

Black/African/Caribbean/Black British 1.1% 1.5% 1.3% 0.2% 1.1%

Other ethnic groups 0.9% 1.0% 0.9% 0.3% 0.8%

All non-white ethnic groups 13.5% 13.0% 9.8% 2.7% 9.6%

Table 5: Ethnic groups by age 2011 [73]

54

CHAPTER 3: HEALTHCARE POLICY AND CASE-FINDING IN CVH

55

INTRODUCTION

Screening in healthcare is performed at a population level by testing people who are

asymptomatic e.g. bowel cancer screening with inclusion criteria of age. Case-finding is a more

targeted type of screening for groups in a population at higher risk, or perhaps could be viewed

as screening within a subgroup of the population. Data on case-finding somewhat lacking but

there is some data on screening, particularly methods to encourage the uptake of screening but

mainly the facilitators and blockers to screening uptake.

I. Screening in Medicine

Health screening and reduction in health inequalities are national and international priorities

[123, 124]. Screening identifies asymptomatic people, providing earlier diagnosis, better

health outcomes [125-130] and decreases mortality [126, 131]. Screening tests are introduced

based on analysis of the effectiveness, cost and acceptability of the program [132-134].

Significant proportions of the population must participate to observe improvements in outcome

with uptake being the most important factor in determining a program’s success [135-137].

Screening programs in adults are mainly cancer-related [45]. Many programs actively promote

screening, utilising resources to facilitate uptake and often offering free screening [134].

Despite this, uptake often remains suboptimal, mirroring health service uptake in general with

pockets of the population showing poor coverage [114]. At the same time, there is recognition

of the importance of cultural, social and economic factors on health and health behaviours.

Arguably, these requirements are more important in screening where there is a lack of driver

to seek health care as the population targeted is asymptomatic.

However, within the spectrum of screening is case-finding where rather than target whole

populations specific higher-risk subgroups are targeted. As such, the same accepted standards

for screening should apply to case-finding.

Minority groups generally have a lower uptake of screening. Across screening programs there

are identified logistical, psychological and cultural barriers [138]. Black, Asian and minority

56

ethnic groups (BAME) are more likely to have a poorer experience of care as well as lower

attendance at various screening programs in both the UK and USA [139-146] . Attempts to

improve uptake have been made by instituting various interventions, often based on single

screening modalities or single populations (i.e. akin to case-finding) [147-149].

Various systematic reviews looking at interventions to improve screening have been limited

by heterogeneity of methodology and the lack of rigorous assessment of the effect of

interventions used. There are, however, some important findings in the literature. In particular,

a systematic search of literature published between 2000-2008 was carried out, focusing on

interventions to improve uptake of screening in specific subgroups of populations with low

uptake, rather than increasing general screening rates [147]. A consistent problem across such

reviews is a substantial amount of data comes from North America where financial and

organizational factors are not in keeping with those in the UK There were findings that would

appear more generalizable with multiple reviews showing culturally relevant interventions

along with those that minimize logistical difficulties had the most effect [147].

A UK public health based systematic review conducted in the context of breast and cervical

cancer suggests a multifaceted approach is required to design interventions that are language

and culture specific for ethnic minorities [150]. These two systematic reviews of the evidence

on strategies for increasing screening participation concluded that almost all active recruitment

strategies examined were more effective than no intervention [147, 150]. It was, however,

unclear whether individualized messages helped or hindered, with contradictory literature.

Those interventions that provided logistical help with appointments were overall helpful,

although the use of peer educators and lay health advisors had mixed outcomes.

As part of this work, I have performed a systematic review of interventions to improve

screening uptake amongst ethnic minorities [151]. There was little UK based data as was found

in other reviews. The heterogeneity of groups and methodology of trials poses a challenge in

analysing the data available. However, I still found themes when reviewing the data by type of

intervention. Multifaceted interventions were broadly successful as were group-education

sessions and media interventions. Apparently less successful were lay-health worker (LHW)

interventions; despite being the most common intervention type.

Recommendations from these all these reviews include a call for more robust data and more

57

outcome measures to reduce inequality in screening in the UK In particular, they highlight a

need to focus on a small number of interventions with favourable outcomes in a UK context;

setting up a central facility for published and grey literature on interventions and systematic

introduction of new interventions locally with good practice highlighted with the ability to

assess the transferability to other geographical areas.

The problem faced by these studies is that many of the trialled interventions relate to

established national screening programmes with facilities in place to reach the target

population. This is something that is not yet in existence for our target population and

condition. Additionally, there are emotive and other issues around cancer screening that may

not be relevant to this project and as such the interventions and the data around them may not

be extrapolated well to this study.

II. Screening in Liver Disease

Screening for liver disease in general has been considered given the rising burden of both

morbidity and mortality this is causing in the UK (see Figure 1). Chronic liver disease has been

underestimated as a global public health problem. There would appear to be a need for

screening as it is a prevalent condition that is silent in the early stages of disease. There is a

need for effective global actions including education, prevention and early diagnosis for

management and treatment to prevent cirrhosis-related morbidity and mortality. The aetiology

of chronic liver disease will vary geographically and also over time as the expected fall in

chronic viral hepatitis makes way for other causes such as NAFLD. There does, however,

remain a need for public health population-based awareness and action. Health literacy in

liver disease remains low, even in those who are known to have chronic liver disease [152].

However, screening in liver disease can be problematic and it is unclear which test would have

adequate sensitivity, specificity and acceptability to the individual whilst still being affordable.

Liver function tests can be normal at all stages of liver disease. Invasive screening by liver

biopsy would represent an unacceptable clinical risk and resource utilisation. Whilst there is

an ever-increasing ability to screen non-invasively this is not always effective and is more

useful for determining risk of cirrhosis and prognosis in established liver disease. Furthermore,

serological markers can be difficult to interpret e.g. antimitochondrial antibody (AMA)

58

positivity with normal LFTs. However, there have been calls to screen the general population

for liver fibrosis, despite it being unclear what shape this will take [153, 154].

A population-based cross-sectional study in Barcelona aimed to determine the prevalence of

liver fibrosis in adults without known liver disease [154]. They randomly targeted adults aged

18-75 years from their primary health care registry, with a participation rate of 63.2%.

Participants underwent assessment of medical history including alcohol consumption,

anthropomorphic measurements, blood tests and assessment of liver fibrosis by measuring liver

stiffness with transient elastography (TE) with Fibroscan®. Increased liver stiffness was

judged as >6.8kPa. Those with liver stiffness measurement (LSM) >6.8kPa or ALT >x2 upper

limit of normal were referred to a hepatologist and this represented 10% (9% with raised liver

stiffness measurement) of their study population, with 66% ultimately taking up this consult.

Additional analysis using higher stiffness measurements were also reported with 5.8% of their

cohort having LSM >8.0kPa and 3.6% with LSM >9.0kPa. A correlation was demonstrated

with male gender, abdominal obesity, T2DM, serum glucose, HDL, TG and raised AST/ALT

and raised liver stiffness. Similar work with population based screening confirmed a link with

diabetes mellitus and steatosis, with liver stiffness >8.0kPa in 5.6% of a European population

[155] and 4.7% in a Taiwanese group who also found a significant association with AST and

diabetes mellitus [156].

A subgroup of the Barcelona study underwent liver biopsy with significant liver fibrosis (F2)

of 9.2kPa (sensitivity 93%, specificity 78%). The underlying aetiology was ultimately NAFLD

then alcohol. TE was more accurate than ALT, NAFLD fibrosis score and FIB-4. However,

these tests were designed for different purposes. This study found almost 75% of their cohort

with LSM >9.2kPa had normal ALT demonstrating that assessment of liver biochemistry on

its own is not a successful strategy. However, this was a white population, with only 5%

BAME. Importantly, there was no cost analysis. Additionally, this was aimed at detecting

those with risk of liver disease from primary care. However, in the UK funding of such a

program is likely to be difficult. Furthermore, there are still secondary care centres in the UK

who do not have direct access to Fibroscan® which would make such widespread roll-out

challenging.

A simpler approach has been advocated, utilising ALT for population-based screening, arguing

59

elevated ALT levels are correlated with the grade of necroinflammation which is known to be

important in progression of liver disease, even if not stage of fibrosis. Furthermore, ALT

measurement is simple and inexpensive which will allow further investigation to assess for

fibrosis. The sensitivity of ALT could be improved by better defining a normal range, and

repeat measurements could be achieved easily which would further improve sensitivity for

chronic liver disease detection [157].

Overall, there is currently no clear target for a single test that would meet accepted criteria for

a screening test for liver disease.

III. Existing Literature on Case-finding in CVH high risk groups

Given migrant communities are recognised as a higher-risk group for CVH, there have been

clinical trials to engage a range of migrant communities in CVH testing. These are a

heterogeneous group of studies in terms of the population studied and the methods used within

the trial.

Community based interventions (CBIs) are often multifactorial interventions combining

individual, group and policy features to promote health among population groups in a defined

local community. In most cases, entire communities (e.g. a whole city) are used as units of

intervention. From the ethical point of view, it seems reasonable to offer prevention to all

members of a community. Whilst they can offer the opportunity to trigger large scale change,

they can be expensive in resource and time and it can be challenging to measure outcomes as

the time scale needed to detect significant change (especially in less frequent events). CBI, an

example of a complex intervention, include the nature and extent of the relationship between

the clinical team and the target community. The ideal intervention having been described as an

equal partnership between experts and the communities they serve where the experts provide

scientific rigour in study design and implementation and the community involvement supports

the study in a sociocultural domain [158]. This relies on the community engaging and

supporting with the research team from study concept, design and implementation as well as

the intervention itself and the need for it.

60

The term community can be used to describe a population but can also describe a group of

people with a shared identify and sense of belonging which can be utilised to support change

and implement policy within the group. Community-based has a wide range of definitions,

however, in the public health setting it has been described in the following domains:

community as the setting; community as the target; community as the agent and community as

a resource [159].

Community as the setting principally defines a geographical location where an intervention is

carried out e.g. within a city or particular venues such as churches. The intervention can be

varied depending on the setting such as mass media strategies or educational classes targeted

at individuals, families, networks or policy areas. The interventions themselves may utilise

patient public involvement within the community to create investment within the target group

in the project as well as to facilitate appropriate targeting of the information and intervention

type to the defined population. Overall, the aim is to change the behaviour of individuals in

order to reduce the populations risk of illness as population change relies on the accumulation

of individual change.

The community as the target is a strategy that involves widespread change in public policy and

services in order to develop healthy community environments. The aim of this strategy is to

look further than change in individuals’ behaviour and target the interventions to foster

community changes, particularly related to public health, to change the health status

characteristics of the community such as the ban on smoking in public places or developing

intervention to improve air quality targets.

The community as a resource is an approach, often used in health promotion, that emphasises

community ownership of interventions affecting them to improve participation within the

target population to improve the long-term viability and success of interventions. This can be

for an outcome selected by the community itself, or a pre-existing focus from national or local

priorities but which relies on external agents and resources to achieve the desired outcomes.

This approach is often used in major public health campaigns.

The community as the agent is similar to the community as a resource but relies on utilising

and further developing the pre-existing support networks and adaptations within existing

communities such as families, social networks and clubs as well as local business, voluntary

sectors and local government.

61

However, these concepts are used in conjunction with each other, rather than in isolation as

community-based health promotion requires a multi-faceted approach to identify, engage and

develop relationships with the target community. Indeed, it has been suggested that modern

community based public health strategy has two core features namely strengthening the health

of communities and building community capacity to address health-related issues [159].

Most published studies focus on testing strategies in established migrant communities,

typically utilising lay community or religious leaders to facilitate testing, recruitment and

engagement. There is heterogeneity between studies, and the success of testing uptake is often

not apparent, with difficulties in knowing the number of people the intervention reached. Often

testing uptake is inferred by the study size, number of participants and recruiting events

required to achieve the number tested.

In all voluntary community-based approaches, self-selection bias a common factor, and it has

been suggested that rates of infection may indeed be higher in those individuals who do not

take up such offers, due to co-morbid disease, or risk-activity that makes them paradoxically

reluctant to attend [121]. Whilst primary care testing is an alternative that may reach out to

these individuals, recent studies in West London have shown poor attendance (10%) by

members of migrant communities in specially prepared new-patient testing sessions, despite

an estimated local migrant prevalence of over 40% [160].

A range of different techniques have been utilised to recruit to testing studies as well as for

testing itself. In the UK, various sites where there are large migrant groups were involved in a

study that tested almost five thousand people for viral hepatitis at fifty-two different sites with

oral fluid testing in community venues. Some were also approached in primary care waiting

rooms whilst attending for another reason. However, the primary aim of this study was to

determine prevalence and as such interventions were not utilised [121]. A pilot study in the

North of England invited members of the South Asian community to attend screening sessions

for CVH by finger prick testing in a mosque and community centre, testing 329 people in four

sessions finding 1.8% of HBsAg, 2.8% past HBV exposure and 1% HCV Ab positive [161].

Also, in the North of England, the South Asian population were targeted through mosques and

community centres to raise awareness of chronic HBV through advertisements and meetings.

All 156 people who attended these meetings were tested with dried blood spot with one active

62

and ten previous exposures found [162]. However, this may represent a selection bias as it

may be those already interested in health screening or hepatitis attended. It is not clear who did

not turn up to the sessions who the advertising reached.

Investigators in Dundee aimed to investigate the prevalence of HCV in an immigrant Pakistani

population and the effectiveness of an outreach testing intervention that was effective but had

problems with recruitment, small numbers and lack of female participation [11]. This study

involved a series of awareness meetings where risk factors for infection, prevalence, lack of

symptoms, the slow progressive nature of disease, complications and the existence of treatment

were discussed. The tested population was skewed towards males (85%) and attempts to

increase female participation by engaging community women’s group but these groups focused

on the older generation or those not working. There were issues with this study that are

acknowledged by the authors. Utilising mosques (and religious venues more generally)

excludes those members of the population who do not attend that venue. In line with the

majority of studies of this type, testing relied on study participants volunteering for it. Whilst

this is less problematic for pure case-finding it is a limitation in prevalence studies where

participants may only volunteer for testing if they feel they are at high risk [11]. Overall, the

authors conclude the Pakistani population has higher rates of infection that justify intervention,

particularly given the cultural and religious events that would provide effective arenas for a

targeted intervention [11]. This is supported by modelling from NICE showing that provided

the prevalence of chronic viral hepatitis in migrants from minority groups was at least 2% then

it was estimated that it would be cost effective to find, treat and test within such communities

[3].

In the UK, community-partnership approaches have been tested in the South Asian community,

utilising religious and community settings in Mosques, Temples and established community

venues. Such approaches and settings seem to be popular, with close to 4600 individuals tested

in (primarily) religious settings across the UK [121]. The support of religious leaders, and the

delivery of testing at the place of worship (through finger-prick blood tests, or mouth swabs)

do seem to be important, whether purely due to convenience or not, with the same group

showing no uptake in testing when 5000 invites were distributed to a Mosque without local

testing at that venue [121, 163].

Similar methods, utilising primarily religious settings have proved successful in studies in the

63

Egyptian Coptic community, and in the Korean Christian community in North America,

achieving a high number of HBV and HCV tests in these populations, with around 100

individuals tested per session in the US based Korean Church study [164, 165]. Similar studies

in the Chinese community in the UK have used established community venues, churches and

local wholesalers to advertise testing, with testing uptake in around 230 individuals (around 15

individuals per session) [166].

A study in the Netherlands mailed out invites to 1787 Dutch-Turkish people identified from

the regional migrant registration records. This letter (and a reminder invite where needed) led

to a 16% uptake of testing. When testing was further advertised in a local newspaper and

website the uptake of testing rose to 30% [167]. This method performed better than a previous

study of the same population using religious and community leaders only (10%) [168], but was

more intensive in requiring regional government input to identify and invite people.

An American based study utilising community based participatory research developed an

educational programme for Korean Americans based in churches to raise awareness and

promote testing for HBV [169]. Results of this pilot study showed at 6 months follow up 93%

of the intervention group were tested, with only 2.9% in the control arm tested [169].

A Belgian study in a South Asian population demonstrated linkage to care was better in a point

of care group than formal venepuncture as well as lower cost per person screened [170].

Behavioural modification has been attempted by researchers in the Netherlands, providing

behavioural and cultural prompts to link HBV and HCV tests to religious (Islam) and cultural

beliefs of healthcare, and wellness. Such methods have not shown a clear benefit in testing

uptake, but perceptions towards health and testing were higher in those individuals receiving

behavioural interventions with the potential for these strategies to have benefit over the longer

period in healthcare engagement in migrant communities [171]. As such community

partnership models with support from religious and community leaders seem an effective route

to approach migrant groups for testing, but with the limitation that these measures are largely

restricted to those established migrant groups with existing community venues, or religious

homogeneity.

The largest and community testing program based in New York City, the BfreeNYC project,

64

undertaken between 2004 and 2008 tested 8,888 migrants (mainly of Chinese and Korean

descent) for HBV. This was a large-scale program advertised extensively including in major

media outlets and championed by city councillors. Stigma was not reported from the wider

community during the advertising process, and indeed members of the Asian community

associated less stigma towards viral hepatitis as a result of the awareness-raising programme

[172, 173].

An electronic health record prompt to primary care physicians to test Asian American patients

for HBV versus a control with no prompt showed an increase in testing order in the intervention

group (40.9% v 1.1%) with uptake in testing in the intervention group of 30 of the 36 requested

patients [174].

Most community testing studies focus on testing in one community, with a Dutch study by one

of the few to describe testing in multiple geographically separate migrant communities in a

single event [168]. Individuals were identified and directly invited by mail from the local

municipality. Advertising was delivered in local media sources (newspapers, websites), with

no mention of any undue stigmatisation in the wider community, and with an uptake of HBV

and HCV testing in 30% (959 of 3226 individuals) who attended a community talk delivered

by hospital physicians. Individuals attended from Asia, Eastern Europe and the Middle East

with marked cultural diversity, but with reasonable levels of engagement from all groups. Rates

of infection differed between communities, but the high levels of uptake in first generation

migrants from different populations is positive [168].

A meta-analysis of interventions to promote HBV testing found nearly half (7/15) utilised lay

health workers (LHW). Six of the seven LHW-led interventions were one off activities that

delivered educational content tailored to a particular community’s cultural and social context

[169, 175-180]. All of these studies were conducted in the USA or Canada. Self-reported HBV

testing rates were higher among groups that received one of these single LHW educational

interventions to improve HBV knowledge and promote testing compared to groups that

received no or unrelated educational interventions (RR = 2.68, CI 95; 1.82–3.93). All studies

found LHW-led interventions had a positive effect on HBV screening; however, these results

were heterogeneous. This heterogeneity in effect size may be due to differing study design

(three were RCTs randomized by cluster, and three were RCTs randomized by individual) and

intervention setting (three were home visits, and three were delivered at a community-based

65

organisation). These findings are consistent with the growing body of evidence demonstrating

that lay health workers can effectively perform a range of interventions that would otherwise

be undertaken by trained medical personnel. The lay health workers in the six studies received

training in order to help tailor the educational intervention and this training component was

relatively simple and of low cost. Analysis found the interventions acceptable to the study

participants and to the LHWs. While the importance of cultural context in developing

interventions to improve HBV screening in high-risk populations and the usefulness of

community settings in the delivery of healthcare is important, the low-cost nature of this

intervention could facilitate its used in resource limited settings. However, many LHW studies

rely on self-report of testing and do not report on results of testing. The accuracy of this is not

established.

A UK based study utilising primary care databases in East London were screened for migrants

at risk of viral hepatitis. Identified patients were sent invitation letters with information sheets

in their native language and asked to attend for testing. However, the trial was stopped early as

only 2.3% took up this offer [181].

A more recent UK based study aimed to determine whether incentivising and supporting

primary-care physicians in areas with a high density of migrants increases the numbers of adult

migrants screened for viral hepatitis [182]. This was a multicentre, open, cluster-randomised

controlled trial in general practices in areas of the UK with a high density of migrants

(Bradford, Yorkshire, Northeast and Southeast London). General practices were randomly

assigned to an opportunistic screening (control) group or to one of four targeted screening

(interventional) groups. The interventions were either standard (i.e. hospital-based) care and a

standard or enhanced invitation letter or community care and a standard or community care

and an enhanced invitation letter. In control screening, general practitioners (GPs) were given

a teaching session on viral hepatitis and were asked to test all registered migrants. In the

intervention, GPs were paid a nominal sum for setting up searches of records, reimbursed for

signed consent forms, and supported by a dedicated clinician. The primary outcomes were the

proportion of patients eligible for screening, the proportion of those eligible who were sent an

invitation letter in the intervention groups, the uptake of viral hepatitis screening (in the

intention-to-treat population) within 31 days of being sent the letter, the proportion of patients

who tested positive for viral hepatitis, the proportion who complied with treatment, and the

cost-effectiveness of the intervention. To determine whether screening migrants in an area with

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a low density of migrants was effective, they also did a parallel, non-randomised sub study

with identical procedures and outcome measures in Oxford. All patients who tested positive

for viral hepatitis in the screening trial were eligible for enrolment in the embedded trial to

compare standard hospital-based care to community care. Community care was delivered at

general practice surgeries that were not necessarily the surgery where the patient was normally

seen. Most of the primary care centres that were approached participated (63 of 70). In the

eight control general practices, screening was taken up by 1.7% of eligible participants, the 50

general practices that used the intervention, screening was taken up by19.5% of eligible

participants (p=0·014) and the intervention was cost-effective. Testing uptake was similar for

enhanced versus standard letters (p=0.26). The investigators conclude that screening migrants

for viral hepatitis in primary care is effective if doctors are incentivised and supported.

Community care is expensive and there is no evidence that this offers benefits in this setting or

that bespoke invitation letters add value.

Linkage to care for positive cases is poorly documented in most studies, with high rates of

individuals lost to follow-up. As noted above, the largest study of this nature, the BFreeNYC

study, around 57% of trial participants were kept in services until the end of the 4 year study

[158].

In summary, the SA population in the UK has a higher than average prevalence of chronic viral

hepatitis with morbidity and mortality also disproportionately higher. A key driver amongst

clinicians and health care policymakers is to identify the hidden burden of chronic infection

and thus minimise the burden of end stage liver disease and its complications. Identification of

this hidden burden of CVH is key to the aim to eliminate CVH as a public health problem by

2030. In order to facilitate the uptake of testing amongst this particular at-risk group

identification of the barriers to change and access to health care will be carried out within the

community setting with an aim to improve uptake of testing. A particular target will be females

who have been underrepresented in previous studies. There is no data at present on the effect

of an educational film and this project aims to explore the feasibility of performing such a trial

that if successful could be rolled out in other regions with a view to developing new policy and

services that are accessible.

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CHAPTER 4: AIMS, OBJECTIVES AND STUDY DESIGN

68

INTRODUCTION

This chapter provides an overview of the aims and objectives of this thesis. It was community-

based work looking specifically at detecting chronic viral hepatitis in South Asian migrants.

Migrants from moderate to high prevalence countries, such as South-Asia, are considered a

higher-risk group in line with NICE recommendations [3]. Case-finding for chronic viral

hepatitis is a national and international priority. Despite guidance recommending testing of

higher-risk people, it is unclear what specific intervention is effective in achieving this goal.

There are two studies which make up this thesis. The first explored existing knowledge of CVH

in our target community through focus group discussions. The knowledge gained from this was

used to develop a short educational film on CVH that was culturally and linguistically tailored

to our population. As part of the funding application the nature of the intervention (film) was

predetermined. The second study was a feasibility study using this film in community settings

to encourage testing for CVH. A questionnaire was developed to be used before and after the

film to help analyse its utility.

These two studies were funded by the National Institute of Health Research (NIHR) research

for patient benefit stream (PB-PG-1013-32094). This grant was awarded to Professor Aftab

Ala with the sponsor the Royal Surrey NHS Foundation Trust, Guildford and I was appointed

clinical research fellow thereafter.

STUDY 1: EXPLORING AWARENESS OF CVH IN THE SOUTH ASIAN MIGRANT

POPULATION IN ORDER TO DEVELOP A TAILORED EDUCATIONAL (FILM)

INTERVENTION

I. Aims

1. To report current ideas, knowledge and opinions on viral hepatitis amongst South Asian

migrants

2. To identify barriers to testing for CVH in the SA community, and more generally any

barriers and facilitators to accessing healthcare for this population

3. To identify key themes emerging from focus group data analysis to aid development of

an educational intervention (culturally and linguistically tailored film)

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4. To develop a questionnaire to be complete pre- and post-educational intervention to aid

analysis of the intervention

To gather information, focus groups (FGs) were used. These have benefit over questionnaires

and individual interviews by allowing discussion and exchange of ideas. The role of facilitator

is key, and this was performed by a culturally and linguistically appropriate researcher.

The FGs were encouraged to discuss chronic viral hepatitis and to identify knowledge and

attitudes to risk, testing, diagnosis and treatment through the design of a FG guide. Data was

also gathered on opinions on healthcare, particularly access and stigma. Ideas were also

gathered from participants on how best to structure the film and also how to use existing

community groups to facilitate recruitment to study two. A particular aim was to gather and

incorporate the views of women as previously this group have been underrepresented.

Participants were recruited in a number of cohorts as shown below:

Cohort 1: Focus Group Participants:

Recruitment of first generation South Asian (SA) migrants to a series of focus groups

discussing CVH in community and religious settings. The FG data was analysed, using

thematic analysis, to create themes which were the basis of the structured message for

the educational film.

Cohort 2: Participants used in the filming of the educational intervention:

This was a mix of patients known to the clinicians on the study team, and clinicians

themselves. Combining expert testimony with real life stories was favoured by the

participants in the focus groups. A selection of questions were put to each participant

whilst being filmed leading to many hours of footage. These questions were designed

to address the key themes and common misunderstandings seen in the FG discussions.

The recordings were transcribed and subsequently refined to highlight the key messages

from the focus group data with the input of a professional film maker.

Cohort 3: Validation Cohort:

Validation of the educational intervention and questionnaire by new participants with

no prior involvement in the work.

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STUDY 2: A NOVEL EDUCATIONAL INTERVENTION TO IMPROVE THE UPTAKE OF

TESTING FOR CHRONIC VIRAL HEPATITIS IN SOUTH ASIANS (SA): A

FEASIBILITY STUDY

I. Study Aim

To assess the feasibility of recruiting South Asian people in community settings to view an

educational film to promote testing for viral hepatitis in South East England.

II. Patient Recruitment

Awareness of the project was generated via an advertising campaign of leaflets and flyers

which were distributed in locations within the SA community and through word of mouth

spread of information. This built on the links already established from study 1, but those who

participated in the focus group study were not recruited to avoid bias. Recruitment and

advertising sites included:

➢ Local religious centres

➢ SA community social events

➢ Local community centres

➢ Primary care

III. Trial Process

After consenting to participate in the film screening, trial participants were asked to complete

the pre-film questionnaire. Thereafter, the film was shown and the post-questionnaire issued.

After showing the film, a simple announcement mentioning an offer of testing for CVH was

made, explaining this was a finger prick blood test. Fully informed consent for blood testing

for CVH was taken in addition to the consent for viewing the film. Following NICE guidelines

[3], I utilised Dried Blood Spot testing (DBS) previously successfully used in studying viral

hepatitis in British-Chinese and British-Asian populations. DBS testing entails a sample taken

using a commercial kit that involves placing a drop of blood on a prepared card. The sample

provided will be tested for:

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1) HCV antibody and

2) Confirmation of positive results

3) HCV RNA

4) HBV surface antigen

5) HBV core Antibody

For the feasibility study the following criteria were set as measures of success:

o Monitor patient consent, recruitment and retention rates for participants who

attend the screening of the film and who are tested to inform future design and

methodological issues.

o 40% (n=80) of participants watching the educational intervention will go on to

be tested.

o 90% of participants to see the educational intervention will complete the pre-

film questionnaire

o 80% of participants will complete the post-film questionnaire

o Feasibility of methodological procedures, including collating data relating to

patient experience of completing the questionnaires, and assessing patient

feedback

o Generate data for primary outcome measure to enable exact sample size

calculation for the main trial

IV. Regulatory Approvals

Phase 1:

REC Reference: 16/EE/0138, (proportionate ethics approval) IRAS project ID: 195901. Ethics

committee: East of England: Cambridge Central Research Ethics Committee

Phase 2:

REC reference: 17/LO/0881, IRAS project ID: 224711

National Health Service Health Research Authority. Ethics Committee: Surrey

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CONTRIBUTIONS

For both of these studies, I was principal investigator with Professor Aftab Ala chief

Investigator. The research assistant (Ayesha Ahmed) is a South Asian migrant with both

medical and public health degrees. Co-investigators for these studies were Jane Hendy (Brunel

University Business School) and Tushna Vandrevala (Kingston University – Psychology). I

wrote both study protocols and all study information (including participant information sheets

and consent forms) as well as writing and managing ethics approval applications and

amendments.

Study one Focus Group work:

Establishing PPI/stakeholder group: Claire Kelly, Aftab Ala

Identification of community sites: Claire Kelly, Ayesha Ahmed, Aftab Ala

Visits to community leaders and sites: Claire Kelly, Ayesha Ahmed

Focus Group moderation guide: Claire Kelly, Ayesha Ahmed, Jane Hendy, Tushna Vandrevala

FG moderator: Ayesha Ahmed (to provide cultural and linguistic congruency to help the flow

of discussion).

Translation and transcription of FG discussions was done by a professional translation and

transcription service to ensure accuracy. I transcribed a FG that was performed in English.

I performed a parallel separate analysis (thematics) for this thesis alongside contributing to the

analysis by the whole research team.

Study two Feasibility Study:

Identification of community sites: Claire Kelly, Ayesha Ahmed, Aftab Ala

Advertisement of the study: Claire Kelly, Ayesha Ahmed, Aftab Ala

Visits to community leaders and sites: Claire Kelly, Ayesha Ahmed, Aftab Ala

Recruitment sessions: Claire Kelly, Ayesha Ahmed, Aftab Ala

Consent of participants: Claire Kelly

Blood Testing: Claire Kelly

Data Analysis: Claire Kelly (supervision of a statistician - Professor Skene, University of

Surrey).

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SECTION B: STUDY 1 DEVELOPING A NOVEL EDUCATIONAL

INTERVENTION TO IMPROVE THE AWARENESS OF VIRAL

HEPATITIS IN THE SOUTH ASIAN COMMUNITY

74

CHAPTER 5: STUDY 1 METHODS

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STUDY OVERVIEW

This was a community based study using focus groups to explore knowledge, attitudes and

barriers to testing for viral hepatitis in the South Asian community. Data gained from these

focus groups was analysed to generate broad themes, which in turn led to key messages being

identified. These key messages centred around themes generated in FG data analysis and also

served to correct common misconceptions were found in FG discussions around CVH. These

themes and messages were then used to form questions to be put to interviewees that were then

edited to develop an educational intervention (a short film) to improve uptake of testing for

chronic viral hepatitis.

AIMS

1. To report current ideas, knowledge and opinions on viral hepatitis amongst South Asian

migrants

2. To identify barriers to testing for CVH in the SA community, and more generally any

barriers and facilitators to accessing healthcare for this population

3. To identify key themes emerging from focus group data analysis to aid development of

an educational intervention (culturally and linguistically tailored film)

4. To develop a questionnaire to be complete pre- and post-educational intervention to aid

analysis of the intervention

STUDY INCLUSION AND EXCLUSION CRITERIA

Participants were recruited to the study if they met the following inclusion criteria:

1. First or Second Generation South Asian migrant (participants were classified as

South Asian based on self-identifying as such)

2. Age 18 years of age or older

3. Ability to speak English or Urdu

4. Ability to consent to participation - consent will be taken as per ICH good clinical

practice (GCP) standards.

Exclusion criteria:

1. Involvement in an earlier cohort during this phase of work (excluding those identified

in FG as having relevant stories for our film)

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South Asian migrants were recruited as an example of a higher-risk group based on prevalence

rates in this population. The World Health Organisation (WHO) have issued a call to eliminate

chronic viral hepatitis as a public health problem by 2030 and to achieve this there must be

efforts to diagnose the hidden burden of disease. However, there has been little evidence on

effective educational interventions to promote testing of those at increased risk. As part of the

funding application (National Institute of Health Research, research for patient benefit stream

(PB-PG-1013-32094) for this work, the nature of the intervention (film) was predetermined.

This first study was split into three sections. Firstly, focus groups were run with the South

Asian migrant population to address existing knowledge and opinions on CVH and to identify

issues with barriers to testing. Secondly, analysis of this focus group data allowed generation

of themes to structure key messages that would inform the development of an educational film

and aid identification of where we can show this in study 2. Thirdly, a questionnaire that could

be used pre and post film screening was developed, based on existing validated questions to

aid the interpretation of our results.

Participants were recruited in a number of cohorts, with the assistance of stakeholder and

patient public involvement (PPI) groups to identify potential recruitment sites and strategy.

Cohort 1: These participants were recruited to focus groups which were held in community

and religious settings. These focus group discussions allowed us to identify the knowledge,

ideas, concerns and expectations of the community and use this information to develop themes

for our intervention (film).

Cohort 2: These participants were recruited to be filmed as part of the intervention

development. The participants were filmed answering a variety of questions in their own

words. These questions were formed by analysis of FG data to generate themes for

discussion. This led to many hours of recording that were then transcribed and edited in

multiple rounds to select the most powerful statements and most appropriate participant for

each message e.g. knowledge coming from experts and experiences from patients.

Cohort 3: These participants were recruited for validation of the educational intervention and

questionnaire. They did not participate in earlier stages of this study to avoid bias. They were

shown the film in its final format and also completed the pre and post film questionnaire. This

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was to ensure both the film and questionnaire were understandable in both English and Urdu

forms and to identify any difficulties in filling out the questionnaire or in viewing the film. A

final edit of the film and the questionnaires was then completed based on this feedback.

Regulatory Approvals

This was a proportionate ethics approval (REC Reference: 16/EE/0138, IRAS project ID:

195901)

STUDY STRUCTURE

I. Cohort 1 – Focus Groups Structure

Focus groups were utilised to determine existing knowledge and attitudes to CVH and

healthcare access in the SA community. These FGs had the benefit over questionnaires and

individual interviews of allowing discussion and exchange of ideas. The role of facilitator is

key and as such was performed by a culturally and linguistically appropriate researcher.

The stakeholder and PPI groups helped identify potential recruitment sites and develop links

with community leaders to facilitate recruitment. An advertising campaign detailing the study

was launched using leaflets. The advertising material (appendix 1) was distributed to local

community centres, social events and religious venues. This provided details on the FG venues

and timings and provided contact details for participants to obtain further information. The

patient information sheets and advertising were made available in both Urdu and English.

These languages were chosen as the most commonly spoken languages from the region, as we

could not provide interpretation for all languages and dialects.

I found that participants wished to attend a particular FG based on a combination of geography,

logistics and with family/friend groups wanting to attend together. This was at odds with our

original intention to recruit participants and then divide into FGs suitable for their

demographic, with groups split by age (older and younger adults) and gender.

The focus groups themselves were held in English or Urdu/Hindi as required by participants,

who were encouraged to discuss chronic viral hepatitis and to identify knowledge and attitudes

to risk, testing, diagnosis and treatment. In order to establish freedom to speak, there was no

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list of predetermined questions to answer, but there was a guide for the moderator to ensure

our aims were met as far as possible. This had pre-determined information to obtain and

included questions if these did not automatically come up. The guide included a statement to

be read at the start of every focus group to emphasise there is no right or wrong answer and

that all contributions are valid. The focus groups were run by a native Urdu speaker (with both

public health and medical degrees) and as we were trying to obtain information on access to

healthcare, we felt this could be more difficult with UK born doctors present. The FG guide

highlighted the following key areas to be covered if they were not naturally addressed during

the discussion:

1. Knowledge and experience of CVH

2. Access to healthcare

3. Perceived stigma of CVH

4. Severity of disease

5. Transmission

6. Treatments of CVH

The focus group discussions were audio recorded to ensure accurate transcription and where

necessary translation. Those in Urdu were professionally transcribed and translated with back

translation to ensure accuracy and were read by those fluent in both languages to ensure

accuracy.

After consenting to participate in FGs, demographic data was gathered to ensure representation

across the SA population and to see whether any subgroup analysis would affect our results

and therefore impact the development of the educational film. Specifically, data on educational

attainment, language, time spent in UK and religion were gathered (appendix 2). A particular

aim was to determine the views of women as previously this group has been underrepresented

in studies of this type.

Whilst most of the FG were conducted along gender lines, one was not at the request of the

attendees who were more comfortable with a mixed group. Initially, we planned to recruit 32-

40 participants based on one FG (estimated attendance 8-10) for each gender and age group.

This was surpassed as initial analysis revealed that young, educated men were under-

represented in the cohort and so a further FG was arranged to address this gap. This was related

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to the FG being less structured in age as we initially planned as per participants preference

described above.

Focus group data was analysed via thematic analysis using NVivo 10 software.

II. Utilisation of Focus Groups as a Method: Strengths and Weaknesses

There are a variety of methods of data collection in qualitative research. The most common

methods used, particularly in healthcare research, are interviews and focus groups [183]. FGs

were first employed in the early 1940s in an effort to move away from interviewer-dominated

research methods [184]. A focus group is a group discussion on a particular topic organised

for research purposes. This discussion is guided, monitored and recorded by a researcher

(facilitator or moderator). They are used for generating information on collective views, and

the meanings that lie behind those views. However, they will not function well where

participants are not comfortable with each other, are unable to speak as a group (language

factors) or where statistical analysis is required [185]. The make-up of a FG needs

consideration to ensure the data collected is optimal. The nature of the discussion and the

preferences of the target population will be important factors to consider before organising a

FG discussion. This was taken into account in this study where FGs were single gender as per

participant request, except for one group where a mixed-gender group was requested. The FG

method aims to obtain data from a purposely selected group of individuals rather than from a

statistically representative sample of a broader population.

Group size is important, the optimum size for a focus group has been described as six to eight

participants, but there have been successful FGs with anywhere between 3-14 participants. In

smaller groups, discussion may be limited but conversely larger groups may be more difficult

to manage and may mean not all participants get opportunity to speak.

The venue for a focus group is important and should be accessible, comfortable, private, quiet

and free from distractions [186]. This is why we held our FG in community venues that were

known to the participants.

The role of the moderator is to facilitate group discussion, not lead it. However, they should

also ensure all participants get the opportunity to contribute and that discussion is not shaped

by a dominant participant. The moderator should be able to allow different views to be

80

exchanged and discussed and encourage participation in those who are less vocal [186]. The

facilitator is central to the discussion not only by managing existing relationships but also by

creating a relaxed and comfortable environment for unfamiliar participants (this is why we

utilised a research assistant with a medical degree and spoke Urdu as a first-generation migrant

from SA).

With regards recording of FG data outputs, videotaping will require more than one camera to

capture the whole group, as well as additional operational personnel in the room. This can be

intrusive and affect the spontaneity of the group and does not usually yield additional

information. Therefore, our FG discussions were audio recorded only.

Whilst there are multiple ways to structure FGs, I utilised the single focus group. The key

feature of a single focus group is the interactive discussion of a topic by a collection of all

participants and a team of facilitators as one group in one place. This is the most common and

classical type of focus group discussion.

The purpose of the research interview is to explore the views, experiences, beliefs and/or

motivations of individuals on specific matters and provide a deeper understanding of topics

than would be obtained from purely quantitative methods, such as questionnaires. Interviews

are, therefore, most appropriate where little is already known about the study phenomenon or

where detailed insights are required from individual participants. I utilised FGs rather than

interviews to focus on the SA group collectively and to appeal to this community in its broadest

sense. Whilst we would hear individual views, these are by their very nature variable and

potentially conflicting and the value of FG was in hearing this discussion play out in the group

to see whether a consensus was achieved and to also note the frequency of any conflicting

viewpoints. Structured interviews are, essentially, verbally administered questionnaires, in

which a list of predetermined questions are asked, with little or no variation and with no scope

for follow-up questions to responses that warrant further elaboration. Consequently, they are

relatively quick and easy to administer and may be of particular use if clarification of certain

questions is required or if there are likely to be literacy or numeracy problems with the

respondents. However, by their very nature, they only allow for limited participant responses

and are, therefore, of little use if depth is required. I did not feel this was the best model for an

exploratory study of this nature. Unstructured interviews do not reflect any preconceived

theories or ideas and are performed with little or no organisation. Unstructured interviews are

81

usually very time-consuming (often lasting several hours) and can be difficult to manage and

to participate in, as the lack of predetermined interview questions provides little guidance on

what to discuss. However, given the number of participants to include and the comfort the

community took from meeting in groups it was felt this was not feasible.

Focus groups are particularly useful when there are power differences between the participants

and decision-makers or professionals, when the everyday use of language and culture of

particular groups is of interest, and to explore the degree of consensus on a topic [187].

Although focus group research has many advantages there are limitations. Some can be

overcome by moderating, but others are unavoidable and particular to the nature of this method

of data collection. The moderator must allow participants to interact and ask questions to keep

the conversation focussed on the topic without leading or controlling the discussion.

Additionally, participants are self-selected and study results are therefore harder to generalise

to the population as a whole [188]. Focus groups can be difficult to assemble, and this can

make getting a representative sample more difficult. There are certain groups who are less

likely to participate, such as those who are not confident, and those who have communication

or language problems. Finally, focus groups are not fully confidential or anonymous, because

the material is shared with the others in the group.

The principle of theoretical saturation, where focus group discussion sessions are run until a

clear pattern emerges and subsequent groups produce no new information has been applied in

most types of FG studies [189]. This is the technique used in this study.

III. Cohort 2 - Educational Intervention development

Focus group data was analysed to generate key themes. These themes formed the basis of the

questions to be put to each person being filmed. Prior to running the focus groups, it was

hypothesised that the film would feature the following categories:

1. Ease of testing

2. Patient story: Diagnosed positive and cured

3. Patient story: Diagnosed positive and on treatment

4. Physician explanation of CVH and the treatment process

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However, this planned structure was modified after analysis of the results of our FG discussions

revealed there was significantly less knowledge on CVH than predicted (see chapter 8 for

further detail on the film production). Initially, it was expected that recruitment for the film

would come from FG participants. However, given there was less experience of CVH than

expected this was not possible. Additionally, feedback from the community suggested that it

was preferable to have cultural and linguistic congruity with the SA community and to be

identifiable as such. Therefore, an ethics amendment to recruit from our Hepatology clinic in

the Royal Surrey County Hospital was made. The aim of including those who tested negative

in our film was to give information and reassurance on the process of testing. Suitable patients

were approached and we recruited a patient who was treated for hepatitis C and cured, a liver

transplant recipient and a community leader who had previously been tested and was negative.

Two SA physicians (one male, one female) who are hepatology experts were also recruited.

These were recruited based on feedback from the FGs and also our stakeholder group.

In order to develop and produce the educational film, a professional filmmaker with healthcare

experience was hired. He was able to advise on technical aspects of the film production and

how to edit the story line.

Each film participant was recorded answering a series of questions. The two medical experts

(one SA male, one SA female) were asked the same questions. These were on knowledge,

access, the testing and treatment process. This focussed on correcting misconceptions seen in

the FG work The patient participants were asked to outline their experiences. Specific

questions were then asked of all participants to ensure all aspects of our messages were

covered. The question and answer format was advised by the film producer as it was felt this

would appear more natural and conversational than asking participants to read a set text. It was

also felt important that the participants own words came across particularly for the patients.

The film producer determined the ideal locations for the filming of both lay participants and

experts. Given the nature of the intervention, participants were filmed in a variety of

community settings to avoid the film appearing as a series of interviews.

The language of the film was the subject of discussion with the community, the researchers,

stakeholder and PPI groups, and we decided to incorporate this question into our focus group

discussions. It was felt both English and Urdu versions should be available.

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Once each participant had been interviewed on film, there were seven hours of recording. The

content was then transcribed as this allowed all statements to be categorised into one of the

five key themes from the FG data. These were then further sub-categorised into individual

messages. We then decided which message gave the most powerful content (both from the

point of view of content and person delivering the message) and this was then highlighted as a

section of interest to the film producer. This led to a first draft of film containing key messages.

This was reviewed to ensure participants participated equally and all previously highlighted

messages were included. This first draft was long (over 30 minutes) and so was edited again

twice using the process above. The film producer then used his expertise in fillers and artistic

work to generate the final version to be validated.

The following represents a summary of the key steps in producing the educational film

intervention:

1. Story line development from analysed FG data and generation of questions for each

participant

2. Identification of filming sites for each participant

3. Recording and transcription of the interviews of film participants

4. Scene selection

5. Editing process- transcription and translation

6. Editing first round to summarise content and maximise impact of key messages

7. Editing second round

8. Fillers and artistic work on the advice of the film producer

9. Final version showed to participants as part of the consent process

IV. Questionnaire Development

A questionnaire was used to facilitate assessment of the utility of the film. This was self-

administered before and after viewing the film. The questionnaire was designed with a 5-point

Likert scale from strongly agree, agree, neither agree nor disagree, disagree and strongly

disagree. It was based on existing validated questionnaires where possible. Additional

questions around utility of the film, intention to test and knowledge on CVH specific factors

were designed by me. For ease of administration the same questionnaire was used pre and post

film. Individual questions were combined into broad categories reflecting attitudes of the

participants to health and health care; knowledge of chronic viral hepatitis; stigma;

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transmission and infection with CVH; utility of the study intervention and processes;

experience of CVH; factors influencing testing and intention to test.

The knowledge domain was included after realising there was less awareness of CVH than

anticipated. Attitudes to health and healthcare helped us to understand how empowered the

community felt about their healthcare needs and intention would let us know if people were

already considering testing for CVH independently of the film. Stigma was included to be sure

the film addressed any concerns in this regard. Additionally, a free text box for comments was

included for any additional feedback.

V. Validation

A new group of people (n=5) who had not participated in this study before (to avoid bias) were

shown the film in its final format. This was to establish whether the film could be understood

and to gather feedback on its content prior to final edits. Each participant was recruited serially

and shown the film individually and feedback gained. By the time the fifth participant was

recruited there was no new opinions and all five participants agreed. Therefore, it was felt

feedback was saturated and no further recruitment was made. The film was further refined on

the basis of common themes in their feedback, namely that the film was too long, the Urdu

used was too formal and so less likely to be understood in all communities and sound issues

were corrected. Two versions of the film were ultimately produced one English, one Urdu.

As part of the validation, these participants also reviewed the pre and post film questionnaires.

This allowed me to refine the questions and ensure validity across languages (they were

reviewed in both English and Urdu forms). The Urdu questionnaire was back translated to

assess for accuracy and ease of understanding. The main issues encountered were formatting

based with some questions not suitable for the 5-point Likert scale and these questions were

therefore re-formatted. Again, the Urdu was noted to be too formal and so was edited to a more

colloquial form for all participants to understand.

DATA ANALYSIS

Focus groups were audio recorded. Each group recording was then transcribed and translated

where required. Where this was the case, back-translation was also performed to ensure

accuracy of meaning e.g. idioms were encapsulated.

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This is a qualitative study; therefore, I conducted thematic analysis to generate salient themes

from the focus group discussions. Thematic analysis (TA) is a type of qualitative analysis

where patterns, or themes, are identified within data. It is flexible because it is not related to a

particular theoretical framework. Thematic analysis is particularly useful to examine people’s

experiences, views and perceptions as well as questions related to understanding and

representation. There are different ways TA can be approached, I used an inductive method

where coding and theme development are directed by the content of the data as this seemed

most appropriate to the nature of this work. However, the flexibility of TA can be considered

a weakness as it may be used as a way to summarise data rather than provide true analysis.

This has led to the generation of a six-step framework to provide a clear guidance through the

process of the key point of thematic analysis; to identify patterns in the data (themes) and to

use these to address the research question [190].

Step 1: Become familiar with the data

The first step in any qualitative analysis is reading and re-reading the transcripts to become

familiar with the entire data. This aids in later generation of codes.

Step 2: Generate Initial Codes

This phase involves the systematic organisation of the data. Coding is a key feature of this

stage and reduces the volume of data into smaller categories. Whilst coding can be done in

various ways, I used open coding that means I did not have pre-set codes but developed and

modified the codes as I worked through the coding process. I developed initial ideas about

codes when I finished Step 1.

Whilst a theme captures a common, recurring pattern across a dataset, codes tend to be more

specific, capturing a single idea that is of interest in relation to the research question. Related

codes are later combined together to create themes. Coding is flexible and continues to evolve

as analysis proceeds. There is no correct way to code and as such no reason to employ methods

relating to inter-rater reliability.

Step 3: Search for Themes

A theme is a recurring pattern or message that represents something significant from the

generated data and codes and/or the research question. By the end of this stage, the codes

86

should be captured into themes. It is, however, possible to generate miscellaneous themes for

codes that do not fit together or into the other themes. This can then be reviewed at the

following stages.

Step 4: Review themes

This stage involves the review, modification and development of the preliminary themes. The

data associated with each theme is reviewed to ensure the data does support the theme.

Thereafter, the themes themselves are reviewed as to ensure they represent distinct areas but

fit overall in the data. The frequency of themes may also be relevant in the analysis and so can

be noted.

Step 5: Define themes

This is the final refinement of the themes, and the aim is to determine the nature of each theme,

how themes relate to each other and what the core message of each theme is.

Step 6: Write Up

Whilst TA has many benefits, particularly in the context of this study, it is recognised that there

are potential weaknesses in its use. Use of the questions of the interview or focus group as

themes, having inappropriate themes in number (too many or too few) or in content (too much

overlap between themes or themes were content is not related) are recognised weaknesses.

Additionally, there can be a discrepancy between data and analysis, with either too many or

too few extracts to support analytic claims or failing to provide analysis and using a summary

from extracts. Each theme should be distinct and clear whilst all themes come together to

encapsulate the data obtained.

87

Figure 15: Overview of the structure of Phase 1

88

CHAPTER 6: FOCUS GROUP RESULTS

89

I. Focus Group Demographics

In this initial study eight focus groups were run. Demographic details by focus group

are shown in tables 1-8, with a summary by the entire cohort in table 9.

Attendance at each focus group was in the range of 3-11 participants. Four of the focus

groups involved female participants, three male and one group was mixed which was

in keeping with cultural norms and preferences of the hosting centres. A variety of

community-based settings (religious, community centres and local residences) were

used. Of the female only groups, two were held in different community centres, one in

a local mosque and one in a residential house. The male focus groups were held in

mosques (two groups) and a local residential house. The mixed gender group was in a

GP surgery.

A total of fifty three people participated in our focus group discussions, with an equal

gender distribution (51% female, 49% male). There was a higher female representation

in the younger age (25-40 years) group compared to males (44% v 19% respectively)

whereas males had a higher representation in the older (61 years plus) group (50% v

33% respectively) as shown in Figure 16. The majority of participants came originally

from India (42%) or Pakistan (47%); and these figures were similar for females (44%

for each country) whilst there were slightly less men from India than Pakistan (38.5%

v 50% respectively) compared to the overall cohort (see Figure 18). Whilst the average

number of years spent in the UK was high at 22 years for females and 34 for men, this

likely reflects the older age range predominance and the range for both females (1-48

years) and males (7-50 years) was wide with males more likely to have been in the UK

more than 20 years compared to females (see Figure 17).

Overall, the cohort was educated with a majority of females completing higher

education (56%) as had many males (46%), with very few people (n=6; 11%) not

completing at least secondary school education or not answering the question with

males over-represented in this group (see Figure 19).

The majority of participants were Muslim with two thirds of females and one half of

males describing their religion as Islam as shown in Figure 20, which may reflect the

use of mosques to host FGs. There were a similar number of males (23%) and females

90

(22%) describing themselves as belonging to the Hindi religion. A greater proportion

of males (29%) did not identify with either of these two religions compared to females

(11%).

Most participants (83%) were married with males more likely to be married than

females (88%, 78% respectively). Only small proportions of the total cohort were either

widowed 9% (n=2 males, n=3 females), separated/divorced 6% (n=1 male, n=2

females) or single 2% (n=1 female).

Part of the questionnaire at the FG sessions was to ask if participants had been tested

for CVH before. This was to help us understand whether personal knowledge was

present in terms of any treatment options. Overall, n=4 (8%) participants were tested

previously for CVH, mainly men (n=3 males, n=1 female). Two of these males were

positive for CVH (uncertain whether HBV or HCV) and both were previously treated.

Two males did not provide an answer, with similar proportions of males (19%) and

females (18%) unsure if they had been tested.

Participants were also asked if they had been vaccinated for HBV, with 34% stating

they were vaccinated which appeared to be more common in females than males (41%

and 27% respectively). Again, two males did not answer, with a further n=7 (27%)

males and n=8 females (30%) not knowing which equates to 28% (n=15) of the whole

cohort not aware of their vaccination status. Males were less likely to be vaccinated

(38% were not) compared to females (30% were not).

91

Figure 16: Focus Group participants by age and gender

Figure 17: Number of years focus group participants have spent living in the UK

Other refers to missing data point

60 40 20 0 20 40 60

25-40

41-50

51-60

61+

% of attendees

Age

Ran

ge

Focus Group Participants by Age

Females Males

60 40 20 0 20 40 60 80

<5 years

5-10 years

11-20 years

>20 years

Other

% of attendees

Focus Group Participants Years in UK

Females Males

92

Figure 18: Country of origin of Focus Group participants

Figure 19: Maximal educational attainment of Focus Group participants

60 40 20 0 20 40 60

India

Pakistan

Other

% of attendees

Focus Group Participants Country of Origin

Females Males

80 60 40 20 0 20 40 60

Secondary

Higher Education

Professional

Other

% of attendees

Focus Group Participants Educational Attainment

Females Males

93

Figure 20: Religious belief of Focus Group participants

80 60 40 20 0 20 40 60

Islam

Hindu

Other

% of attendees

Focus Group Participants Religion

Females Males

94

Table 6: Female FG 1 Community Centre

Age Stay

in

UK

Country

of Origin

Marital

Status

Education Language Work Religion HBV

Vaccine

Tested

for CVH

Diagnosed

CVH

Treated

F

4

41-

50

26y Pakistan Married School Urdu

Punjabi

Language

teacher

Islam No No NA NA

F

5

61+ 45y India Widow Professional English,

Urdu,

Punjabi

Retired Islam Yes No NA NA

F

6

61+ 47y India Married Professional Urdu

English

Voluntary

work

Islam No No NA NA

F

7

51-

60

36y Pakistan Married School English,

Urdu,

Punjabi

School

escort

Islam No No NA NA

Table 7: Female FG 2 Mosque

Age Stay

in

UK

Country

of

Origin

Marital

Status


vaccine

Tested

for CVH

Diagnosed

CVH

Treated

F

1

25-

40

10y Pakistan Separated School Urdu Punjabi Cleaner Islam DK DK DK DK

F

2

41-

50

1y Nepal Separated Nil Nepalese,

Hindi

Cleaner Buddhist No No NA NA

F

3

25-

40

3y Pakistan Married University Urdu English None Islam Yes Yes No NA

95

Age Stay

in

UK

Country

of Origin

Marital

Status


Vaccine

Tested

for

CVH

Diagnosed

CVH

Treated

F8 25-

40

7 India Married Professional English, Hindi None Hindu DK No NA NA

F9 25-

40

13y India Married University English, Hindi,

Tamil

None Hindu Yes DK NA NA

F1

0

25-

40

8y India Married University English, Hindi None Hindu DK No NA NA

F1

1

25-

40

12.5

y

India Married University English, Hindi Admin Hindu Yes No NA NA

F1

2

25-

40

12.5

y

India Married University English, Hindi,

Urdu, Kannada

None Islam Yes No NA NA

F1

3

25-

40

11y India Married Professional English, Hindi,

Tamil

Business

woman

Hindu DK No NA NA

F1

4

25-

40

5y India Single Professional English, Hindi Party

planer

Hindu Yes No NA NA

F1

5

41-

50

10y India Married University English, Hindi None Catholic Yes No NA NA

Table 8: Female FG 3 Domestic Residence

96

Table 9: Female FG 4 Community Centre

Age Stay

in

UK

Country

of

Origin

Marital

Status


Vaccine

Tested

for CVH

Diagnosed

CVH

Treated

F16 25-

40

4y Pakistan Married School English,

Urdu

None Islam No No NA NA

F17 25-

40

11y Pakistan Married University English,

Urdu,

Punjabi

None Islam DK No NA NA

F18 61+ 48y Pakistan Married - English,

Urdu,

Punjabi


F19 41-

50

14y Pakistan Married School Urdu None Islam No No NA NA

F20 61+ 40y Pakistan Married University English,

Urdu,

Punjabi


F21 61+ 40y Pakistan Widow College English,

Urdu

None Islam DK No NA NA

F22 25-

40

13y Zambia Married Professional English,

Hindi


F23 61+ 43y India Widow University English,

Urdu


F24 61+ 40 Pakistan Married University English,

Urdu


F25 61+ 45 India Married University English,

Urdu

None Islam DK DK NA NA

F26 61+ 40 Pakistan Married College English,

Urdu

Admin Islam Yes DK NA NA

97

Age Stay

in

UK

Country

of

Origin

Marital

Status


Vaccine

Tested

for CVH

Diagnosed

CVH

Treated

M1 51-

60

47y Pakistan Married School English, Urdu None Islam DK DK DK DK

M2 51-

60

25y Pakistan Married University English, Urdu Postal Services Islam No No NA NA

M3 61+ 12y Pakistan Married - English, Urdu None Islam No No NA NA

M4 61+ Many

years

Pakistan Widow - English, Urdu None Islam No No NA NA

M5 51-

60

31y Pakistan Married - English, Urdu Self Employed Islam DK DK DK DK

M6 51-

60

48y Pakistan Married College English, Urdu Yes Islam - - - No

M7 51-

60

35y Pakistan Married College Urdu Yes Islam No No NA NA

M8 61+ 50y Pakistan Married School Urdu None Islam No Yes No No

M9 61+ 49y Pakistan Widow School English, Urdu,

Punjabi


Table 10: Male FG 1 Mosque

98

Table 11: Male FG 2 Mosque

Age Stay

in

UK

Country

of Origin

Marital

Status

Education Language Work Religion Vaccine

HBV

Tested

for

CVH

Diagnosed

CVH

Treated

M10 61+ 54y Bangladesh Married School English, Bengali None Islam DK DK NA NA

M11 61+ >50y Pakistan Married College English, Urdu,

Punjabi

None Islam Yes Yes Yes Yes

M12 61+ 50y Pakistan Married College English, Urdu,

Punjabi


M13 61+ 50y Pakistan Married College English, Urdu None Islam No No NA NA

99

Age Stay

in

UK

Country

of Origin

Marital

Status


HBV

Tested

for

CVH

Diagnosed

CVH

Treated

M1

4

61+ 50y Kenya Married College English, Hindi,

Punjabi

None Sikh No No NA NA

M1

5

61+ 49y Kenya Divorce School English, Gujarati None Islam DK No NA NA

M1

6

41-50 23.5

y

India Married Professional English, Hindi,

Gujarati

Self

employed

Hindu Yes Yes Yes Yes

M1

7

61+ 40y India Married School Punjabi, English None Sikh DK DK NA NA

M1

8

61+ 40y India Married College English, Punjabi,

Urdu

None Sikh No No NA NA

M1

9

61+ 50y Pakistan Married School English, Punjabi None Sikh DK DK NA NA

F26 51-60 20y Other Married - Punjabi, Hindi,

English

None Sikh DK DK NA NA

Table 12: Mixed FG 3: Local GP Surgery

100

Age Stay

in

UK

Country

of

Origin

Marita

l Status


HBV

Tested

for

CVH

Diagnosed

CVH

Treated

M2

0

25-

40

1y India Married Professional English, Hindi Investment

Banker

Jainism Yes No NA NA

M2

1

41-

50


Gujarati

Software

developer

Hindu Yes No NA NA

M2

2

41-

50

13.5

y

India Married University English, Hindi,

Bengali

IT

Consultant

Hindu DK No NA NA

M2

3

25-

40

7-8m India Married University English, Hindi,

Bengali

IT Manager Hindu Yes No NA NA

M2

4

25-

40


Odia

Banker Hindu Yes No NA NA

M2

5

25-

40

11y India Married Professional English, Hindi, Business

Consultant

Hindu No No NA NA

M2

6

25-

40

- India Married - - - - - - - NA

Table 13: Male FG3: Local Domestic Residence

101

Females (n=27) Males (n=26)

Age Range (%)

25-40 n=12 (44.4) n=5 (19.2)

41-50 n=4 (14.8) n=3 (11.5)

51-60 n=2 (7.4) n=5 (19.2)

>60 n=9 (33.3) n=13 (50)

Country of Origin (%)

India n=12 (44.4) n=10 (38.5)

Pakistan n=12 (44.4) n=13 (50)

Other n=3 (11.1) n=3 (11.5)

Level of Education (%)

Secondary n=5 (18.5) n=7 (26.9)

Higher Education n=15 (55.6) n=12 (46.2)

Professional n=5 (18.5) n=3 (11.5)

Other* n=2 (7.4) n=4 (15.4)

Average Stay in UK (Years)

[Range]

22 [1-48] 34 [7-50] +

Table 14: Summary of Demographic Details of Focus Group Members

* Denotes missing data point or no formal education + Missing data n=2

102

II. Focus Group Discussion Results

The focus group transcriptions were analysed using Thematic Analysis, aided by

NVivo10 software. Whilst the initial aim was to discover what was already known on

CVH, it was apparent there was no real knowledge. Instead, analysis led to the

emergence of five themes: lack of awareness of CVH; testing (testing processes -

logistics and identifying those most likely to benefit from testing); access to healthcare;

attitude to health and stigma. An overview of the findings is shown in Figure 21.

Figure 21: Main themes emerging from FG discussions

103

Each theme is explored in more detail below:

a. Lack of awareness:

Prior to commencing the focus groups, it was hypothesised there would be knowledge

within the community on viral hepatitis and we aimed to determine the level of existing

knowledge and identify the gaps in this knowledge. It was noted there was less

knowledge than expected.

Those who attended the FGs often described a complete lack of awareness of hepatitis

For me I don’t know anything of hepatitis.

Members of the community itself felt general knowledge of hepatitis was not high,

Maybe my perception is wrong, but I feel its low (hepatitis knowledge) in the

scale of 1 to 10 its two or three

and this was consistent across all focus groups of both genders and the spectrum of age

ranges. There was also a lack of awareness that hepatitis was a problem of the liver

Educated people may know the name hepatitis but they don’t know what it is,

like it’s going to impact my liver

And indeed, there was the perhaps common misconception that liver disease was

associated with alcohol

I think people don’t realise; they associate liver problems with alcohol

Whilst the term hepatitis is something people have heard of, they but did not have

understanding of what this is

I don’t know anything this is the first time I am hearing it…. I mean I have heard

but I don’t know what it is and what its symptoms are and how you get it

As well as the potential implications, relating to the possible severity of hepatitis

I think we still don’t know what hepatitis is and if its serious

There was a lack of understanding how hepatitis is transmitted amongst people

I think the problem in our countries is due to lack of awareness about this

condition. They don’t know as to how this disease can spread. I think the

community doesn’t have much awareness of it

104

There were some people with some knowledge of CVH, generally though personal

experience but again this was often confused with other forms of hepatitis or jaundice

There are two types of jaundice. One is hepatitis A which is also called yellow

jaundice and there is the other more dangerous one that leaves the patient with

no choice but to die.

There was particular confusion seen with reference to contaminated water

It is an infection of the liver, it is viral, it is contagious. I believe it has something

to do with water, through drinking water

As well as dietary restrictions

My friend’s son in law he had it, so he was strict in his diet… I mean eating a

lot of fish and whatever the doctor told him. But things like bread and rice you

cannot eat them.

This was further developed in that there was a widespread belief that poor sanitation

generally was responsible

It is more common in places with poor hygiene and in those countries where

there is a lack of clean drinking water

And as such CVH is not a problem of note in the UK

Never heard of it here (UK) unless somebody comes and brings it in with them

It was felt that lack of hepatitis awareness was not seen in other conditions felt more

common in SA

People know a thing or two about other diseases such as diabetes or blood

pressure but there is little awareness about this disease.

Many participants did not find the lack of awareness of CVH surprising, feeling that

generally, people are only informed of diseases when they have personal experience

People try to get information about a disease when they get it. They won’t go

around asking about it when they haven’t got it.

Some people took the general lack of awareness in their community

I think there is absolutely no awareness of this disease in our community

to mean that it was less likely to be prevalent in SA people, as they felt if it was

105

common, they would likely have heard of it

God forbid, this disease is not very common in our community and if it is I am

not sure I am aware of it.

There was a lack awareness that CVH was a public health burden for their community,

I think it’s more in our countries, but I think it is everywhere

particularly here in the U.K

I mean we have been living in this country fifty years right and I don’t think

anything is to do with hepatitis in this country

but this was unsurprising given the confusion between other forms of hepatitis and

jaundice and the association with uncleanliness

They can bring the disease into this country otherwise there are no chances to

pick up the disease in this country.

This confusion with other forms of hepatitis particularly with faeco-oral spread

hepatitis (Hepatitis A and Hepatitis E)

About hepatitis I don’t know much. Someone said that it happens after drinking

dirty water, eating bad food

was widespread and seen in all focus group discussions, even in those with personal

experience

I know hepatitis is through contaminated water or the food.

Also, confusion with jaundice more generally was noted but even then, the perceived

link to poor sanitation was evident

In India there is a lot of jaundice, but I didn’t know that is connected to hepatitis,

especially a lot with poor food and cleanliness

and it was not always clear the distinction between liver disease, hepatitis more

generally and jaundice was understood even when participants aimed to address this

directly

I think, in India, more than hepatitis, what I personally have come across might

be the word jaundice.

The misunderstanding relating to how hepatitis is spread was felt to be a source of

106

concern for some within the community

They don’t know that unless body fluids are mixed, they can’t contract this

disease. But what happens is that they want to avoid the patient because they

think they can catch it by interacting with them

and the association with poor hygiene reinforced an association with poverty and with

CVH being a problem in countries with perceived poorer sanitation and poorer areas

Uncleanliness causes hepatitis so poor countries with less cleanliness are likely

to have more chances of having more people with hepatitis. There are less

chances of it here.

However, there were some with some personal experience who did understand

transmission

It’s not through the air, it’s not contagious it’s like body contact and body fluid

that’s how we contract this hepatitis A, B or C

As well as some without personal experience but who had some understanding

I think that if you have a cut, you should be careful that their blood doesn’t

touch you.

It was felt the term hepatitis was not really recognised as a liver problem, but was a

broad term relating to poor sanitation

Hepatitis means using such things which could be harmful to your health. It

means not caring about your health, like, not keeping your dishes and utensils

and brushes clean and these things can cause hepatitis.

and associated as a marker of poverty

Its most common in poor communities. The reason being that clean drinking

water is not available which is very essential for life.

Furthermore, even where there is understanding there was also some misinformation

At times, not in this country, but in Pakistan we have seen people going to the

barber to get the haircut and to get a shave. The barber’s blade or razor can

cause this. And it can be spread through sharing the same injecting needles.

Maybe I am wrong but also sharing the toilet with a person suffering with

hepatitis

107

When discussing symptoms, there was some understanding of features of liver disease

Sometimes the symptoms are either the skin, you lose weight, plus your eyes,

they go yellow

as well as some recognition of the potentially silent nature of liver disease and hepatitis

specifically

I don’t know, I remember reading somewhere that it can be, you know, that you

have no symptoms, and you still have

There was a realisation that travel may increase risk of infection, but again this was felt

due to sanitation

South Asian communities are more at risk because if I talk of people of my age

and similar, they travel to their countries of origin and consume food and drinks

that could be contaminated

but also people did have an understanding of previous problems with healthcare

practices that were responsible for CVH transmission

You know in bygone days they would use the same syringe to give injections to

different people

Which was mentioned in more than one FG

Injections in Pakistan they use the same syringe, for different patients its

affected by that.

Also, there was recognition of the risks from other medical services such as dentistry

which many people describe having when they travel home due to cost restraints here

and felt able to enquire about the safety of equipment

When I went to the dentist I asked him did you sterilise that

but some misunderstanding about spread person to person

If you live with someone, in a joint family system you can get it.

However, some information did come from awareness of news stories and attempt at

raising awareness through the media

The body shop lady died of hepatitis C, she contracted it in those days, when

she needed a blood transfusion when she was delivering her kids.

108

There were some misconceptions about treatment of CVH, that tied up with the

misconceptions about types of hepatitis but notably it was understood this relied on

finding the illness

In the start if they find out then they can be saved-can cover and control. On the

first stage, on stage A but then if it reaches C then no.

But there was less awareness of vaccination for HBV

I have been vaccinated but I didn’t know exactly what it’s against

There were only a few people who describe personal experience of hepatitis. One of

these did give an account consistent with CVH. The other seems to conflate febrile

illness and jaundice with CVH. Some people did describe experience within the wider

family

I think she got it when she had an operation. Maybe it was due to a poorly

sterilised surgical instrument.

Generally, people did associate hepatitis as being a disease with significant

consequences

What I’ve heard, it’s a very bad disease

with others confirming this view

It is life threatening for sure.

Overall, there was less knowledge than anticipated. Consistent themes emerged

showing confusion between faeco-oral spread of illness and their link to poor sanitation.

Furthermore, jaundice was conflated with the term hepatitis. There was some

appreciation of the nature of spread of CVH with recognition of previous iatrogenic

spread as well as blood contact more generally. Despite these misunderstandings, there

was also recognition that the community overall is not very aware about CVH. There

was, however, a consistent opinion that hepatitis is a serious disease, indeed potentially

life threatening.

b. Testing:

The topic of testing for CVH was raised to determine any concerns about it. Generally,

in relation to the comments above that CVH is not a problem in this country, so it was

109

felt testing is not needed in the UK

No, not here (UK) and you feel safe here

There is a feeling that healthcare activities are safer here, so testing (for any condition)

should be safe where needed

Here I am satisfied. If I go somewhere else, I won’t be sure, which kind of

needles they are using… the compounders …. How clean are their hands? I

think here it is satisfactory.

Both these points were re-iterated across multiple focus groups, given apparent

improved sanitation here and as such testing in the UK may not be as important

It’s through blood or water or unhygienic conditions. So will testing here really

be relevant? Because here hygienic conditions are much better compared to

India

Given these opinions, the groups were specifically asked what they felt about access to

testing, should it be necessary. It was felt that if there is testing available it should be

widely available

Testing, yes if possible, testing should be there for everyone

And others thought testing should be done automatically for those with risk factors

Anyone having a higher risk should be automatically offered (testing)

A driver for testing was to ensure good health and overall for protection of the family.

It was generally felt that the SA population will do as instructed by their physician

I think more than 90% of people in our community do whatever the doctor tells

them to do

And that this extended to asymptomatic testing for medical conditions

I think if the doctor tells the patient to get screening, I think everyone will be up

for it.

It was felt that the onus was on doctors to inform patients

Unless the doctor speaks to us about the screening how on earth are we likely

to know about it?

It was, however, mentioned that the doctor should be clear that testing is required, not

110

optional

If the doctor tells them to do it then they will go for it even if they have to miss

out on their work. On the other hand, if the doctor tells then it’s up to them they

most probably won’t go for it. He would think if the doctor is giving the option

he doesn’t have the need to get screened after all

There was however some concern that the NHS did not always offer screening where

available due to financial concerns

Because at times the NHS doesn’t have the funding for testing and therefore,

they don’t invite people for testing

And participants were not clear on whether to ask the doctor for the test, feeling that

generally doctors did not like this approach

As you say there are no symptoms……. How would we know then? Do we ask

our doctors to get a test done for us, or…. Because they will not be happy,

definitely, and the test added to the test they’re doing

Others went further suggesting that the GP held the power to test or not and the patient

did not have much role to play

Depends on the GP if you get tested

There was some concern raised that the community may be reluctant to test due to fear

and this combined with busy life tasks made people less likely to be proactive

I think there is some kind of fear we have as a community we don’t go into these

things; we are just too busy with our own lives.

There was the impression that men were less likely to visit a doctor and also to get any

health care including testing for any conditions

Men absolutely don’t like going for testing

Although this was not specific to CVH.

It was emphasised that the more testing becomes widespread in the community it will

get normalised and testing will be easier

This is very important- if someone gets a routine testing then others are going

to follow. They will recommend it to you and tell you it’s fine just a small test.

111

This encourages others

There was acknowledgement that having medical tests can cause some anxiety

Will get a little scared

and that there were concerns over the nature of tests

It’s not a small amount of blood they draw, two bottles every time

which meant there should be prior explanation of what is involved and that this will

help allay concerns over the testing process

For testing a person should know everything about what is going to happen. If

you go all of a sudden and you don’t have any idea you will be fearful

Particularly for illness of perceived severity with people anxious over the consequences

of a positive result and as such it is important to give information on the condition prior

to testing

Hepatitis is a very scary disease. You live a normal life before getting screened

and all of sudden you are invited and if you find yourself tested positive for this,

your first reactions will be I’m gone

That will reassure people as to the nature of the illness as well as the testing method

It also depends in the person who explains the test to you or the literature you

get with regards to the screening. If they explain to the person to be tested that

the test was going to be minimally invasive through a small blood sample, they

would feel more reassured

And the particular concerns over the nature of testing were mentioned in multiple

discussions, particularly as it was felt blood tests were relatively minor

But if the person going for the test doesn’t know as to what would be done to

them, whether they are going to be hacked or cut into small pieces they would

obviously feel scared. I think the test must be explained in advance to the patient

that they would only prick

The motivation for testing was felt lacking where people felt well, and that they did not

necessarily associate this with a potential late diagnosis of CVH

A healthy person would normally think that he/she doesn’t need to get tested for

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it because they are healthy. It is a different matter that some of them end up

being diagnosed with a disease towards the very last stage of the disease but as

long as they are healthy they can’t be bothered

And that the main impetus for seeking healthcare would be symptoms

Very few people like to take any form of action without going through or without

experiencing suffering

Whilst people did not think they were likely to consult a doctor without symptoms,

there was discussion that even apparently mild symptoms should prompt medical

review to seek more information from their doctors

If you know there is something happening to your body….and don’t know what

they are then you should go and get it investigated

Others did feel knowledge was important, and that individuals in the community could

spread awareness amongst each other

In my view, not knowing about it won’t be good for us. We must know about it

if we have it. This way we can spread awareness and encourage them to get

tested and get treatment on time. This way awareness can spread form one

person to another

This responsibility amongst the community towards their family and friends was

mentioned in all focus groups, and in particular word of mouth was important to the

community to spread information and knowledge.

The general consensus was that the main priority when it comes to testing should be

people at higher risk

The priority should be to test those who are more prone to contracting it

The importance of prioritising those at higher risk was re-iterated in other focus groups

where again it was stated the NHS cannot test all people

I think it depends on the risk factor…. if they are higher risk of getting it them

getting screened is more important. They have to assess the risk because they

can’t test every single person can they?

And if this risk was defined by country of origin this population should be offered

testing

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People who belong to India, Pakistan, Bangladesh such countries where this

disease spreads more; if they wish they can be tested

If ethnicity was the risk factor, rather than country of origin, it was acceptable to target

testing in this way and testing should be offered routinely

I would say that if we are a high risk group, if South Asians are a high-risk

group, we should be at least offered once a year or something like that…. a test.

It was felt that testing campaigns would be more successful where people understood

the reasons for testing and had assurance regarding confidentiality if this was in non-

traditional settings

Firstly, awareness. You should give awareness to people as to what hepatitis is

and why testing is important. And then maybe if you keep it confidential…. you

know how one thing leads to another in this community

Whilst it was recognised there will be fear about testing, this was not specific to testing

for hepatitis and was felt to be the case for any health issue

Every illness has a fear regarding it. That up until the result comes out you will

be in tension and anxiety

Whilst others commented they were not sure on risk factors for CVH particularly, the

general opinion was regardless of the condition, it was felt if there was any risk to the

person, it would be important to seek testing

All I can say is get some blood test, get urgent medical care. That’s all I know

And whilst some felt this warranted family discussion, others felt not

Ill discuss with my husband and straight away go for the test…. (Reply) Me I’m

not discussing it even I’ll just go

And that it would be important to take up any offer for medical tests to keep yourself

as healthy as possible

Any kind of test request you get, I’m going

In order to find out if there are any problems requiring further investigation or treatment

I would like to know and then can do something about it

Particularly when the illness potentially is not self-limiting

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Rather know than not know because it will not automatically go from the body

right?

And that people should be proactive in this regard, suggesting the onus is on the person

as well as medical professionals

One must take some precautions in advance to avoid it and the testing must be

done for the sake of your health

To allow more positive outcomes in the future

If testing is done, we can find out whether or not we are likely to become ill in

future, so if there is a problem then the treatment would be easier

However, others felt generally there was a fear of finding out about any serious

conditions, particularly in the SA community

I think majority of people in our community think it would be better if they did

not know about their diseases through testing. We don’t want to go for testing,

especially for the serious diseases, we don’t want to know God forbid I have it

or not.

But this was not agreed amongst all participants

I think everyone should be tested to find out what their actual position is like,

just to be on safeguard

And this was reiterated in discussions amongst participants in other FGs, both genders

I think some may be frightened to be tested (reply) it is not as if we are going to

war

It was noted, however, that there is a worry for people that testing will lead to a

diagnosis that can be fatal and so fear was not necessarily only over the mechanics of

testing

There is a fear that people don’t admit, the fear of death and because of this

people don’t want to go for testing

This was related to a fear that if unwell nothing can be done to treat them and so testing

was in essence futile

Before they (the doctors) find out there is hepatitis, you are too late, they are

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gone

But others did recognise the importance of testing before symptoms start

Yes, test, why not, why wait until you are poorly

And that some people do already go for regular health checks anyway

Not just for this one (hepatitis) some people get their entire bodies checked on

regular basis, but others don’t

But others felt there was little knowledge about screening both for hepatitis

I want to say that people know very little about screening. If they don’t know

they aren’t likely to ask for it. I think the doctors should tell to get the screening

done.

and other conditions

I have heard about screening today (in general) I am shocked as I have lived in

this country for a very long time now but until today, I have not got any

information about the screening

And that people are likely to delay testing if they feel well, feeling other tasks are more

of a priority

They think they don’t need screening as everything is fine for now

We did ask opinion on where testing should be located to determine whether

community-based testing would be feasible. There was opinion that the location didn’t

matter as ensuring you are healthy is more of a priority

If you have to do it, it doesn’t matter where it is going to be. The point is we

need to go there to make sure everything is ok with us

Whereas others felt the GP was more convenient despite other concerns about primary

care noted above

GP, I think is much more comfortable, if we go to a GP

And others felt other mosque-based campaigns were a success and would lead to more

awareness of the condition as well as testing

Personally, I think if you test in the mosque then it will give more awareness for

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others to be part of it

And that local testing was preferable to travelling to a hospital

Better whichever place is near you, rather than go to a far-off hospital

No-one felt that potential stigma around CVH would prevent them being tested for this

condition.

c. Access to healthcare

In the UK access to healthcare services is thought to be challenging

I strongly feel that, uh, accessing the healthcare facilities is not good here

And that only once unwell do you get offered tests, with no focus on preventative

medicine

The health services won’t offer the test; only on some cases if you are not well

or something otherwise, they don’t come and ask you

There was repeated concern that language can be a significant barrier to seeking

medical attention

I think lots of people feel shy because of the language

And even if one does present to doctors, language limits the utility of the consult

How can we go to the doctor and say our compliant? We cannot explain our

problem there is no language.

There was an appreciation, however, of the fact that there are SA people within the

health service who can speak the main languages of South Asia

Language can be a hindrance but not here because lots of the doctors are

Indians anyway

However, others did describe a lack of awareness of their own health due to language

difficulties, particularly where there is any social isolation

I cannot talk much with the doctor. I don’t have English. Otherwise, I have a

strong wish to be get myself checked for illness, but I don’t have the language.

That’s why I don’t go to the hospital. I have blood pressure and I don’t know

what else. I have a wish to get checked but I don’t go. I don’t have English and

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I am alone here it is difficult for me

Language challenges, including during the consultation itself made it difficult for

people to seek medical attention, even when feeling unwell

It is very difficult to go to the doctor, there are so many things we cannot say

However, it was felt that even where testing and treatment exists, these were not always

available principally due to financial reasons and there were specific concerns whether

the NHS will fund such pre-emptive healthcare

NHS doesn’t have funds for all this does it. They are trying to cut down as well

(laughter)

It was consistently mentioned that the major driver for healthcare in the UK is financial

and the financial constraints the NHS faces determines what is offered to the public

I mean it boils down to what the government is doing yeah, it is not investing in

the NHS here

And if any intervention is expensive, this will determine whether it is well utilised

It’s a funding issue

It was felt that financial considerations are clearly a priority and that in GP surgeries

there is open mention of funding concerns which can put people off seeking medical

attention even when unwell

There are signs, every visit is costing the NHS this much

Some people did think that even if the money is there, this SA community is not

prioritised for any type of healthcare intervention regardless of whether they are at more

risk

30, 40, 50 years we have been living here. I think that the NHS has funds, but

they are not spent on our community

There was also the belief that GPs were time and resource constrained and this was

clear to patients in their consultation

I don’t think doctors like us even saying anything just go there see them for 5

minutes go.

whilst others felt the pressure on the NHS rather than individual clinicians would mean

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this type of screening may not be possible

When our national health is already severely under pressure with other

illnesses, will it be able to bear the burden and costs for this as well?

Primary care services were not felt to proactively approach patients for preventative

medicine

The GP will never actually come and tell you to come for an annual health check

And it is often felt primary care is not responsive to individual patient needs

I haven’t had much personal encounters because I don’t go to the doctor, but

then they don’t care that much, the doctors, they just keep making you make

trips

And this contrasts with healthcare approaches in the country of origin

…they (UK physicians) don’t care. Even though it costs in Pakistan, but it is

proper. I mean if you go to the right doctor, you get the right treatment and you

get better

Whereas in the UK people felt there was generally a delay to make the correct diagnosis

with multiple trips to the doctor, illustrating this with personal anecdote

But the bottom line is she should have diagnosed it properly first time because

she had been a GP for donkeys’ years

Furthermore, there was a feeling that investigations are not carried out properly

I think the medical system also needs changing. If a patient approaches the

health service, they must make sure the conditions are properly investigated

d. Attitude to Health:

There was a perception that good healthcare relies on doctors leading patients to good

health

The patients only receive whatever treatment the doctors would give to them.

How do we know what treatment is available for this disease?

And that part of their role was to approach patients to encourage testing or investigation

where relevant, and for any individual at risk doctor should come to us regardless of

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the condition

No see, the doctors that are here, so when people go to the doctor why they

don’t say you people should be tested for this also? No one has ever mentioned

that this is one more thing that you should get checked!!

Indeed, it was often felt so strongly in multiple focus groups that if this population was

truly at risk for CVH the doctors would approach them

But they did not test me for hepatitis. I think if we would have been at high risk

or coming from such a country, they would have done it but it didn’t happen

and as this did not happen, there was some scepticism that the population was actually

at an increased risk

If they feel that it’s such a big problem in the ethnicity or this sector, then

probably that is what they should be doing. But, again, you know, I think

because it’s not there, so it’s probably not that prevalent

Overall, people did not feel empowered to speak directly about what they wanted to the

GP

I did not even know there is an option to go to the GP and ask (for a test)

And even if they did, they felt they would not be listened to

The GP will ask what is wrong with me that I need this test. I mean they won’t

help me.

And that for some primary care services were overwhelmed which compromised the

care received by patients

the doctor in the NHS go there so many people say we are like a production line

you know one after another five minutes, two minutes just write a prescription

get them out he don’t go into detail

where others felt dismissed feeling, this was more related to the individual clinicians

They don’t really care, they don’t listen to you

Part of this lack of care, whether institutional or individual, was that the GP seen as

‘gatekeeper’

It’s hard to see a specialist here need to see the GP

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And that there was reluctance to refer on

No see doctors will not recommend you to a specialist

It was felt that if healthcare services were visiting in the community this could be any

gender or ethnicity

I think any person with an NHS uniform/identification should be fine as people

would think that this person is professionally linked

And whilst the role for religious leaders were clear, it was still felt that the doctor had

an important role in health and wellbeing

It’s our community you are helping us the way I see imam is only doing the soul

but you’re our body

There was opinion that males were less proactive about their health than females

I think ladies are more concerned about their health. I do not know the reason

but I have observed that Asian men tend to avoid going to the doctor

And were less likely to seek medical attention

They seem to think that they (men) will automatically recover and they keep

avoiding going to the doctor until it is too late

There was also a belief that illness was out of their hands without recognising that the

individual can play in role in minimising the chances of some illnesses

We tend to believe what will be will be. So yes I understand that our people can

say that if something is going to come to them it will and what will not will not

and so they might be saying yes it better that we don’t find out. Of course, they

don’t realise that we also have to practice prevention from something in order

for it not to be contracted.

We discussed healthcare provision in non-standard settings such as the local

community. Using community venues for health care promotions has been noted before

in the local Surrey SA population

They (other campaigns) used mosques and the English language classes to

create awareness

Coupled with the idea that this population is pessimistic about ill health

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But I think in our community people feel more remorse when they get it. They

think they are going to die and feel disheartened. But in other communities’

patients have more hope and they believe they can fight it. I think we have more

negativity in our community and people don’t believe that they can battle it out.

Therefore, the families can help each other and give moral support to each

other.

Even those who felt there should be individual responsibility to do what they can to

remain well, there was some feeling that there were so many illnesses that one cannot

be informed and proactive about all of them

There are so many diseases. We hear about meningitis, malaria, hepatitis so

it’s like if we start thinking about all of them, I think I will get into a panic state

Particularly when some members of the community still see ill health in any sense as a

stigma

Back home, sickness is a stigma

And this may have some impact on whether people seek medical attention

Going to the doctor is not their priority

But there was a feeling across most focus groups that attitudes in the community are

changing

I think, whether its hepatitis or anything else I think most important is this

generation we are kind of educated

And people are becoming more aware of their health

A lot of elders are not educated, not gone for schooling and they don’t have

awareness of all these diseases, and they are more superstitious and they stick

to it.

But this did not necessarily translate into preventative medicine

I don’t have much awareness about any disease or anything because when we

are healthy and we are running around, we don’t need to, we don’t go to see

the doctor even for routine check ups

And the role of God was felt important in terms of keeping well

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People leave all that to Allah

Although there was a role for God, there was also some recognition of the potential

developments in society and how treatments become available

We could think of Allah’s will for a lot of things but now because there is a lot

of advanced things, one must try one should get treatment

But still some people felt ultimately Gods plan was pre-determined

There are medical ways but Allah has a plan that’s 100%

Whilst there was recognition of the role of individuals and healthcare professionals

there was some reticence to acknowledge the role of healthcare services for those that

are well

We don’t want to go to the doctor to find whether or not we have got any illness.

If I tell a friend that I want to go to the doctor to find out whether or not I am

carrying any illness he will tell me I am a fool because I look healthy and alright

Particularly given the expressed opinion that members of this community did not

always prioritise healthcare

I think most people in our community neglect their health

But did feel they should be informed about health risk factors

If it’s dangerous, if its epidemic like, if it’s contagious we should be told as soon

as possible

And if one does test, then there was recognition that earlier detection could be helpful

for recovery and long-term health

If you find out you have, you are tested, then you are healthy you have no

problem then if there is a problem at least it is treatable quicker rather than last

stage then you have problems

Particularly where it was recognised that later diagnosis can cause problems including

more advanced disease

I think I’ll rather be tested for disease than suffer later on

But there was some concern regarding ability of the NHS to manage screening, and this

would perhaps affect people’s willingness to ask for tests proactively

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Currently we are trying to cover large shortages in the NHS so if something is

there I’ll be happy to go. But I’m not going to go to the GP and ask for screening

for every little thing

But that screening in general was not necessarily a priority for individuals, but

opportunistic testing when visiting the doctor for something else would be acceptable

I wouldn’t go if I am going only for hepatitis, if the screening will cover me for

things a mix, then I’ll go because I don’t really have time to think about

screening

But many did feel it would be better to know if you are facing health problems, whether

CVH or other illness

For me it’s better to know than live in a false reassurance

There was some concern expressed that screening should really only be prioritised if

there is a cure

I think if you know it’s a curable disease you will go and find out, but if you

know it’s not curable…. (Reply) because it will otherwise kill you earlier than

what you’re going to die

But others felt not knowing, regardless of treatment being offered was preferred

I think some people don’t want to know. They think that if they were screened,

they might get tested positive and that’s why they don’t want it. Some people

think this way, but it is wrong.

But that knowledge was key

Whatever the main germs are, or if you feel there is a disease that can ruin your

health and to safeguard from it you need to have a lot of information

And there was a sense of destiny that regardless of the precautions one can take, God

still has a final say

We try our best that all things are good, and we don’t get any illness, we try

from our side but even then from Allah….

e. Stigma:

Generally related to be ill not hepatitis specifically

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There was a sense of stigma relating to ill health in general

They fear the concept of ‘achoot’. They are worried about being made into an

untouchable.

And that this would lead to isolation

People shun the person

And be seen as a risk to others

Because people fear that they may contract the illness from them. To try to avoid

them. Remain apart and away.

This was felt particularly important for men with their role still seen as providers for

the family

As a provider for his family, he feels concerned as to who will look after his

family if he dies

As such, they are less open about ill health

I think this (illness) is a very sensitive issue for men and they hide it from their

families and try to manage it on their own for as long as they can to manage to

do so

Particularly if it is perceived that the illness is related to lifestyle factors

I think people tend to be more suspicious towards men and you would be less

suspicious towards a female because you tend to think that women are less likely

to do a naughty thing

But this was balanced with a realisation that it was not the person but rather the illness

that could be problematic

I think we must try to avoid the illness not the person

And so isolating the person was not needed

Taking care does not mean that if a person is diagnosed with this condition they

should be made into an outcast, or we should completely isolate ourselves from

him. All we need to do is make sure the person gets the treatment and acts upon

the advice of the doctors

But patients should inform themselves as much as possible

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The patient must try to gain more awareness about his condition and the

precautions they must take. They also need to ask on the doctor advice

There were some though, who felt they would find it difficult to act as usual towards

an ill person

I would not be able to be right near, next to the person

Which would be exacerbated by lack of knowledge

Without having the facts, they can kind of isolate that person

There were some people who did mention hepatitis specifically may raise questions

about the patients’ behaviour

So it’s like, you know, if someone husband or like you know someone’s wife is

diagnosed, then it, it is a possibility that people might think that, okay, what is

going on

And this could lead to people being more careful about disclosing health issues

If I am diagnosed, then I would be really careful about who to tell

To avoid the stigma that could be associated

You are vulnerable to those kind of judgements and people behaving differently

for no apparent reason

And this this not only protected themselves from judgement, but protected the whole

family

Yeah, it’s a culture of silence. I think the whole family gets affected if anything,

any kind of news comes out

But it was felt the immediate family would not isolate anyone

But I think in our culture families are already with you. They won’t leave you

left behind

And that for women particularly, they had to try to remain strong to hold the family

together

You have to be mentally strong for everything, and if you are sick, the whole

family goes down

And this included not informing others outside

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Maybe we should just tell the close family members, not spread to everyone

To avoid this idea of being an untouchable

Oh, you are untouchable. Stay away.

Different issues were seen for men, however, and how illness changed the perception

of them

There is more stigma against men being sick. That means they are weak

Particularly if they were not working

The stigma for a man being unwell and at home would be more

Or looking to further their career prospects

He always thinks if he is unwell or diagnosed with anything that may affect his

job prospects

Which often meant women had to hold the family together

It’s all left to the women. You have to do it and I think it’s kind of embarrassing

for them to say it out yes I have a disease, you know pride or something like that

Particularly with hepatitis, which was seen as a potentially fatal condition, people were

scared and uncertain to approach the individual

The thing is that hepatitis, when people hear that name its quite serious, people

are very, sort of scared. Yeah, they are frightened. They say he’s got yarqaan

(jaundice) mate

As jaundice had stigma associated with it

(Yarqaan) is the word that they use for this disease in our language and people

are scared to hear this word

but that lack of knowledge was seen as responsible for many of these more negative

actions

People don’t know about this disease and we don’t want to admit it, we don’t

want to tell others about it. But this is common practice in our community

because of lack of awareness

But others did not think hepatitis was associated with negative views of the person

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There is nothing like that, no discrimination

But much of the stigma was related to ill health more generally and the consequences

for the whole family

Yes, there is some discrimination for that yes, because if a lady is ill we don’t

know whether she is going to be fit for our boys and then she is already suffering

before she gets married and the boys life will be hell you know

Whilst others felt the isolation was really only for contagious illnesses

If someone thinks they can catch something from you, they will stay away, right?

That’s natural

But that sensible precautions should be taken

Take caution in everything, already there is a person in such a terrible state

another shouldn’t be getting it

And for hepatitis particularly there was a feeling that this involved complete separation

of household members

Separate everything clothing, utensils

Which is why it was felt more difficult for females who took on these household roles

It is more difficult for women to cope because a woman as always got to do one

or more chores at home so she can’t take a day off.

And there was not always gender equality in this community

They are not treated equally because there is a gender inequality in our

community, but our younger generation is different (older male comments)

But there was recognition of silence around health

I think most people would not tell others of they have a medical condition. They

would keep saying they are fine.

And it was only divulged when any illness is advanced, and it cannot be hidden any

longer

We speak about it when we think the stage has come when we are not left with

any other option but to talk about it and I think it applies to both male and

female genders

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But this was felt to be something in all communities

I think in every community people hide these things. Those with no awareness

of how this disease spreads will be scared because it is a viral infection and

others will be scared, they might get it from me so they will try to avoid me,

because of this fear I will not tell others about it. Fear everyone will isolate me.

The research team also analysed independently the data and got similar results. These

factors were then used as the basis for the educational intervention.

III. Advice on our project:

The community feedback on our film was that we should not be too negative

You should give them hope. You should tell them what this is and why it is

caused and what can be the consequences of it

and reiterated the importance of imparting knowledge

The video should not only show the consequences, it should be informative and

it should explain what hepatitis is and how it can be spread. I mean, rather than

just telling them about its consequences, they should also raise the awareness

as to what it actually is. People in our community don’t know whether it is a

viral infection or any other disease. This way you can also give people hope,

for instance, you can tell them it is caused by a virus and you can treat them.

And GP surgeries, despite the negative sentiments expressed by some about primary

care, were felt to be important community places to show the film

At GP surgeries as well when people are waiting in the waiting area and you

can show the video on the TV monitor.

We sought advice about language and it was felt both English and Urdu (which is

understandable to most in this community) were important

I think in both languages. I know that some people may have lived in this country

for 30-40 years and even if they can’t read English, they can understand spoken

English. There might be some who may not be able to understand English at all,

you can translate the same video for them in Urdu.

And so we decided on voiceovers and subtitles as well as making the video in both

English and Urdu

…. if your item is in English, you can provide the translation

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to appeal to the age range of people in this community

If there is the younger generation they are good in English. But the older

generation better in our own language.

As was true accounts from people who had experienced hepatitis

You can also include the view of those who have already gone through it.

It was also felt an explanation of why testing is being offered would be important

I don’t know what the method should be but really want this awareness to reach

people as to why this testing is being offered and that this testing is for our own

good. And I am sure they will pay attention.

As awareness was felt to be the key to encouraging testing

Without awareness we aren’t likely to get ourselves tested. If we don’t know

why we need to get tested, we won’t go for the testing

As well as providing notice especially for those with children

Like today you have kept this programme, run more. Wherever there are

gatherings for women, inform them beforehand last minute is very difficult and

they will come

Others re-iterated a simple approach of explaining hepatitis

Firstly, what is hepatitis point 1 point 2 how and where does it spread point 3

what are the effects

And not using too complex language and concepts to ensure all can follow the film

narrative

You have to go slow and steady. If you are a doctor, then you must have the skill

to be able to explain things to the common man. Praise be to God, doctors are

very learned, but many times they don’t reach to the limit up to which general

public has knowledge or ability to think, or to absorb. So it is not just enough

to say to them, they have to be able to absorb it and to be able to explain its

main points at home to family and children or friends.

The importance of having patients who have had hepatitis explain their positive

outcomes was mentioned

I think we should have someone who has already been through this, and the

positive response, outcomes

And using their stories to encourage people to get tested

Real life examples, resonates with people that they need to go and get tested

And how they experienced more complications from any delay to testing

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The real-life story of someone who delayed the testing so what were the impacts

of that

And the nature of the diagnostic pathway

How easy is it to be diagnosed and what are treatment options?

The major ways it can be spread

And ideas on appealing directly to women, particularly emphasising the importance of

keeping well for the whole family

For us, family is very important so if we have awareness or if we tell those

women how important it is for the family and their wellbeing I don’t think any

woman will want to take that risk or take that chance in life that she is not there

for her kids or family

It was felt primary care as well as religious venues could be used as gathering points to

show the film

GP surgeries, gurdwara, temple religious places

It was felt that the only real constraint was to be aware of Ramadan

As long as it’s not the fasting month it won’t be a problem

But it was said that the religious venues in some areas where a focus for the community

In Woking we have a majority Muslim community so the focal point is the

mosque so if you really want to tackle any disease or anything get connected

with the mosque people

And that word of mouth was emphasised as being very important for the success of this

project

Say I get tested then I get back home and talk to the family about it and I will

voluntarily ask my wife to participate and my wife will in turn speak with a few

people and in this way the information will spread from 10 to 100 people

And the community did not feel the ethnicity of the healthcare staff was important

If it’s a doctor or nurse or public health doesn’t matter if they are Asian, a gora

(Caucasian) is fine

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Figure 22: Summary of the outcomes of FG studies

CVH Awareness

Lack of awareness of risk factors, diagnosis &

treatment

Recognised as a problem in their country of origin

Deemed not a UK issue due to perceived improved sanitation

Confusion with other liver disease

e.g. Hepatitis E

Access

Lack of confidence in

accessing healthcare services

Language barriers

Understanding how the NHS

works

Financial considerations

Attitude to Healthcare

Primary care time and resource constraints

"If we are at risk, the doctor should

come to us"

Role of God: "what will be, will

be"

The patient is not listened to and not referred to hospital

services

Testing

Testing not felt to be needed in the

UK

Confusion over processes to access

testing

Anxiety over result

Desire to do what is needed to

protect the family

Stigma

Stigma not readily apparent in CVH, but is with ill health

generally

Gender differences

Isolation

Culture of silence

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CHAPTER 7: FOCUS GROUP - DISCUSSION

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STUDY 1 DISCUSSION

This study was successful in recruiting SA people based in Surrey to join our focus

group discussions. Initially, there was a smaller number of attendees than predicted

with only a few participants, however, as word in the community spread attendance

increased throughout the study. While some groups had only a small attendance the

findings did not differ significantly with the same broad points of discussion, with the

same themes emerging as summarised in Figure 21.

However, I recognise there could be limitations from the relatively small geographical

area of recruitment, particularly relatively to the Surrey population more generally.

Given this is a feasibility study I needed to pilot this program locally before it could be

rolled out more widely. It did mean that the area was saturated with this study 1 work

and meant there would need to be steps taken to widen the geographical area used in

study 2.

DEMOGRAPHIC SPREAD OF FGS

All FGs were run in the community namely local residences, community centres, GP

surgeries and religious venues (only mosques). Females were mainly recruited in

community centres (n=14; 52%) with smaller numbers in local residences (n=8; 30%),

mosque (n=4; 15%) and only one (3%) from a GP surgery. Males were mostly recruited

from mosques (n=13; 50%) with some from local residences (n=7; 27%) and local GP

surgery (n=6; 23%). The lack of males recruited in community centres likely relates to

patterns of behaviour in the community, with males more likely to be working during

the day and attending mosque rather than the community groups that were in place

specifically as support for females rather than any inherent difference in ability to

recruit each gender from these locations. One focus group was mixed gender at the

participants’ request (but only one female) in a GP surgery and the others were single

gender in keeping with cultural norms, particularly in mosques. A success of our

recruitment was the female representation (27 of 53 people). Female representation was

missing in other studies. There was an age discrepancy, with mainly younger women

and older men which may be due to men working and younger women in more caring

roles. Our initial aim was to split focus group attendees by age but we abandoned this

due to difficulties with logistics and family groups wanting to attend together.

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The majority of our population was from either India or Pakistan (89%), with men

mostly Muslim which is probably because two of the male FGs were held in mosques.

The average number of years spent living in the UK was high for both males and

females (34 and 22 years respectively) which may be due to the fact that older men

were represented in our sample. Females were more likely to be newer migrants with

less time spent in the UK (range 1-48 years) than males (range 7-50 years). Education

levels were fairly high, but this may represent immigration and visa rules for SA

migrants being employment related with associated minimum caps on income (as

discussed in chapter 2) although clearly immigration rules have varied over time.

PAST EXPERIENCE OF CVH

A small number of FG participants described being previously tested for CVH, 3 males

and one female (8% overall). Two of these males tested positive and had treatment, the

others were negative. It is unknown if this was HBV or HCV or indeed another illness

altogether given some of the misunderstandings seen in the focus group discussions.

One in five (both males and females) did not know if they had been tested and this is a

common occurrence in clinical practice, where patients (from all communities) are not

always aware of the details of the tests they have had.

One third of the FG cohort described being vaccinated for HBV. Females were more

likely to be vaccinated than men (41% and 27% respectively). The reason is not clear

but may relate to females being younger and thus having exposure to more vaccines, as

well as more records of prior healthcare. It may also be related to pregnancy and local

practices in the country of origin. A similar number (28%) amongst both genders did

not know if they had been vaccinated, with males more likely to say they were not

vaccinated (38%) than females (30%). Again, this may represent males being generally

older and having less updated healthcare records from their childhood. It is also unclear

whether recall is accurate, either positive or negative, and so these figures may not be

entirely accurate. Certainly, in the UK it is only in recent years children have had

vaccination for HBV unless at particular risk.

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FG DISCUSSION OUTCOMES

With thematic analysis, complete separation of results and discussion is not feasible.

The results section (Chapter 6) provides some discussion of themes (lack of awareness,

testing, access to healthcare, attitude to health and healthcare professionals and stigma)

and so in this section I focus on a summary of the findings within each of the main

identified themes (see Figure 21 and Figure 22).

THEME 1: LACK OF AWARENESS OF CVH

There was less knowledge than anticipated on all aspects of CVH. Many of the FG

participants had no awareness of the condition whereas other confused it with different

forms of hepatitis or jaundice particularly faeco-oral hepatitis (Hepatitis A and E) which

is more common in their country of origin. Whilst some participants claimed personal

experience of CVH, even they had some misunderstanding about the nature of CVH,

its transmission and treatment options. It is not known whether they had HBV or HCV

(or indeed if they had another illness) given the frequency of conflation of various terms

relating to hepatitis and jaundice. This lack of knowledge was seen in all groups,

including the younger and older participants as well as males and females. There was a

general conflation of hepatitis, liver disease, jaundice and on occasion alcohol. This,

however, is anecdotally a common misperception across all groups of patients that I

have seen in clinical training. The overriding theme was one of poor sanitation or

uncleanliness being a harbinger of CVH specifically, as well as other illness more

generally, and as such CVH was seen as less of a problem in the UK and was usually a

marker of poverty in individual cases as well as in countries.

There was, however, recognition of the previous iatrogenic spread of CVH in many of

the FGs particularly related to healthcare practices in their country of origin but also

noted was reference to contaminated blood products. Again, somewhat erroneously this

was principally not felt to be a problem in ‘developed’ countries other than by a small

number of FG participants. Those who did recognise it as a problem here had awareness

through previous campaigns (e.g. Anita Roddick, the owner of the Body Shop) to raise

awareness.

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Whilst there was misunderstanding about transmission and potential treatment options,

I feel this was really related to the misunderstandings about the cause of CVH and led

to a general opinion that cleanliness will solve the problem.

Additionally, there was a perception of CVH as a serious illness. However, this was

more of a negative than positive as this opinion did not seem to make participants more

willing to inform themselves, but rather led to pessimism about outcomes if a person is

diagnosed with CVH and frequently, it was felt treatment was either not possible or

futile. This was something to be addressed in the making of the film, as it was felt that

it would impact willingness to test.

THEME 2: TESTING

The aim was to gather thoughts on the pros and cons of testing for CVH. In accordance

with the misunderstandings with knowledge of CVH and its transmission, people felt

testing when resident in the UK was unnecessary due to perceived higher levels of

sanitation and relative lack of poverty. Regarding medical tests in general, it was noted

people were confident this was safe in the UK (as discussed in the context of concern

over ‘compounders’ in participants’ countries of origin). On asking specifically for

views on NHS testing provision if needed, participants felt testing should be available,

while some felt it should be universally available others felt it should focus on those at

higher risk and that testing should be proactive, with the NHS/doctors actively seeking

out those that needed it. The SA community report generally being deferential to

physicians and as such the onus was on doctors to tell them what to do for optimal

health. There were, however, concerns over whether the NHS could afford widespread

testing and where it would lie in a priority list especially as it was felt unwell people

could not always access services and tests in a timely manner and so testing ‘well’

people was not ‘fair’ or a good use of precious resource. There was also discussion that

the SA population are less proactive about their health and accessing healthcare but this

could be countered by ‘normalising’ testing with the widespread introduction of testing

in the community allowing ‘word to get out’ which would naturally lead to more people

coming forward and agreeing to testing when offered.

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Generally, medical appointments and tests were a source of concern and anxiety and

careful explanation of not just what is being tested for but what testing involves would

be helpful in encouraging people particularly as it was felt doctors often assume a

patient knows what testing is. This was felt to be particularly important for CVH where

the perception was one of a condition that is often fatal. This coincided with a feeling

there would be a lack of motivation to test for something so prognostically poor when

the person was feeling well, thinking news of a positive test would instantly bring their

mental state down to hopeless and as such their physical condition would deteriorate

more rapidly.

It was felt that if ethnicity or country of origin were risk factors for an illness then it

was acceptable to offer testing along those lines and this would not appear

discriminatory. Testing in community venue was felt to be acceptable but needed more

thorough education and care over confidentiality.

Some people felt they would take any test offered and felt it was important to try to

keep well for the sake of the wider family more than for themselves. However, other

did counter this with the impression people did not want tested for a serious condition

particularly when feeling well.

There was some recognition of the concept, an indeed examples of, preventative

medicine but whilst others were less aware, a few did not agree with the concept feeling

particularly the psychological effects of knowing about a serious illness were not good,

but this was in the context of general nihilism over CVH and the fact there was little or

no treatment for this condition that was generally fatal.

There was discussion over where would be best to test in the community, with local

testing preferred with discussion over whether GP, community centres or religious

venues were better but none were felt unacceptable. There was no stigma over testing

for this condition specifically.

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THEME 3: ACCESS TO HEALTHCARE

It was felt that language was a barrier to accessing healthcare and could limit the utility

of consults. There was recognition that there were many South Asians working in the

NHS who could often speak the languages of the region and even when finding an

individual healthcare worker they could communicate with, there were still system wide

issues. This is in keeping with discussion in Chapter 2 section V about migrant health

and the factors that influence this. Language and also cultural congruency were felt to

be tied into health literacy especially where there was also social isolation where there

was no family or friends to help individuals navigate the system. UK based healthcare

was noticed to be different from that in the countries of origin and this led to confusion

and lack of confidence in navigating the system. This was felt to be particularly off

putting for screening or preventative medicine and indeed could stop people seeking

help even when they feel unwell as they did not have the language to describe what was

wrong.

The NHS was felt to have considerable burdens upon it, often tied to financial issues.

It was felt that financial considerations were a principal driver for the NHS and

determined what services are made available to patients. The financial pressures were

felt to be very open and indeed these pressures were transferred to patients with things

like signs up in GP surgeries detailing costs of missed appointments and what this cost

the NHS, making participants feel they were a drain on resources and so discouraging

them from visiting. Some participants felt that the South Asian community were less of

a priority for healthcare, even when funds were available to be allocated (marginalised).

The funding concerns meant that most people felt screening and preventative medicine

was not a priority and so even where tests and investigations do exist they would not

be carried out for well people and the focus would be on unwell people as there was a

feeling even unwell people do not always get access to the tests they need.

Healthcare provision in non-traditional settings was familiar to many participants, with

previous projects using mosques in this particular South Asian population (Surrey) for

health promotion and awareness campaigns. The community felt this was appropriate

as they viewed religious venues as a strong centre of the community and a natural

gathering point for people and somewhere they were familiar with and which felt

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comfortable. There was concern raised that the same level of confidentiality should

apply as is seen in the more traditional healthcare venues.

THEME 4: ATTITUDE TO HEALTH AND HEALTHCARE PROFESSIONALS

It was felt that primary care services are time and resource constrained and this was

apparent in consultations. This led to a feeling the primary care institutionally is not

proactive about health and so any measures to detect asymptomatic disease would not

be a focus for GPs. This extended to a feeling amongst many participants that individual

GPs were not responsive to individual patient needs which contrasted with practices in

their countries of origin. It was felt there was delays with diagnosis, a lack of

investigation and delayed or lack of referral to secondary care. It was discussed the GPs

themselves and primary care as an institution aimed to limit access to tests and hospital

specialists, referring on only when they had no other choice and had delayed as far as

possible already. This resulted in a sense of futility in consulting GPs for some people.

Others did suggest this was not exactly the case but occurred as a result of primary care

being overwhelmed, but they agreed this compromised care but not directly at the level

of individual clinicians. Overall, participants felt they would be less likely to ask their

GP for investigations due to these financial and time constraints even when they

recognised earlier investigation could help recovery and long term outcomes.

Members of the South Asian community felt that paternalism was the best way to

achieve good healthcare, with the role of doctors being to encourage and indeed

proactively approach patients to have any care required. It was felt that the South Asian

community are deferential to doctors and they would do as the doctor told them to. All

participants in our focus groups felt that if they were at higher risk of CVH the doctor

would approach them to tell them with such conviction they doubted they were at risk.

However, perhaps the time challenges in primary care are not set up to drive this

opportunistic approach during other consultations and so there needs to be a ‘political’

will to drive this. Often, in primary care the quality and outcomes framework (QOF)

is used in this way. This is a system designed to improve the quality of care patients are

given by rewarding financially practices for the quality of care they provide based on a

number of indicators across a range of key areas of clinical care and public health.

Participation in this scheme is voluntary although uptake rates are high. The four main

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domains are clinical, public health, additional services and quality improvement. Each

domain has a set of measures or indicators against which practices can score points

relating to their performance. It is notable that liver disease is not included in QOF.

There has, however, been a link between the Royal College of General Practitioners

and the British Liver Trust to form the liver clinical priority project, with the aims of

improving the detection and management of risk factors for liver disease and

diagnosing liver disease early to reduce progression to cirrhosis, liver cancer and end-

stage liver disease. Of course, GPs cannot know all details of all liver disease and

therefore these frameworks could be utilised to create awareness and incentivising

particularly in the public health domains may help raise awareness and ultimately

testing for CVH in primary care.

Our study participants felt GPs were gatekeepers for the NHS and they aimed not to

refer to secondary care until they were left with no option. They seemed less aware of

the role of primary care and how some conditions could be managed by GPs. This

contributed to the feeling the people did not feel empowered to ask the GP for what

they wanted and even if they did, felt they would not be listened to. It was felt that

doctors had a role, akin to that of religious leaders, in health and wellbeing and were in

a position of status in the community and as such it did not matter what gender or

ethnicity healthcare professionals were as their role transcends these considerations

even when there were language worries.

With regards to health, members of the South Asian community felt illness was out of

their hands and that the role of the individual in maintaining their health was not widely

recognised. Overall, people were pessimistic about ill health, and felt that even if they

made efforts in one area, there are so many illnesses that this would be impossible

overall. Generally, ill health was associated with stigma and this could limit access to

healthcare professionals, with individuals trying to hide their health problems. There

was agreement that people should be informed about any risk factors they had for ill

health. It was mentioned that screening, or preventative medicine, should only apply to

those illnesses that can be cured. However, many would prefer not to know about the

health challenges they were facing regardless of the potential for treatment. The role of

God was important in keeping well and there was recognition of modern medicine and

techniques but modern medicine and religion worked in tandem, with God the final

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arbiter. It was felt that attitudes in the community were changing and people were

becoming more aware of their health but that perhaps this did not yet quite extend to

preventative medicine.

THEME 5: STIGMA

Stigma was mentioned frequently in all focus groups. It was associated with ill health

generally rather than CVH specifically and this led to a ‘culture of silence’ in the

community making people try to hide their illnesses at times even from close family

and resulted in reluctance to seek medical attention. This was felt particularly true of

men, who were still seen as the providers for the family and so made them reluctant to

seek medical attention. The stigma often led to social isolation where people could be

viewed as a risk to others. However, this was balanced with others stating the illness,

not the person, was to be avoided but that others would need to take care. Some

members of our FG did feel they would stay away from someone who was unwell. The

stigma of ill health was particularly pronounced where it was felt lifestyle factors

contributed or caused the illness. There was the concept of being untouchable where

social isolation would mean all but close family would stay away from the patient, and

there was concern the stigma around them could extend to the whole family. This was

particularly true where the illness was thought of as potentially fatal. Others did

disagree and said now attitudes are changing and that sensible precautions should be

taken but there was recognition the person is already suffering and should not be

isolated as this can lead to the person giving up and becoming more quickly unwell.

There was particular fear around the idea of jaundice due to this being seen as a terminal

condition with no hope for recovery. Stigma was felt to be related to lack of knowledge.

Overall, there was silence around ill health where information was divulged only when

it was serious and could not be hidden any longer, but perhaps this is true in many other

communities.

COMMUNITY ADVICE ON OUR PROJECT:

The key topic discussed was the importance of imparting knowledge. Many of the

negative issues we found related to lack of knowledge. This would also enable people

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to feel more hopeful. It was felt important the film should be positive to further create

hope and address the concept of futility around ill health and CVH specifically. There

should also be mention of why SA particularly need testing and the consequences of

delayed diagnosis. The approach should be simple and not too medical particularly with

language problems, so that people could understand and then spread knowledge within

the community. It was felt that it is important to have personal stories of people affected

and there should be cultural congruency with this. The ethnicity of any healthcare

professionals was not deemed important. However, the diagnostic pathway should be

explained as should the nature of testing. It was felt that the film should appeal to

females as they were seen as key figures in drawing in whole families and in word of

mouth dissemination of information which was felt to be of prime importance in this

community. People felt both Urdu and English should feature to draw in most people

and prevent exclusion particularly in older people who were felt to be more comfortable

with Urdu.

Regarding where in the community would be ideal to show such a film, primary care

and religious venues were prominent as they were felt to be the hub of this community

with community centres mentioned specifically for females. Despite the views noted

above on primary care, it was still felt important to use these venues. A summary of

these outcomes is shown in Figure 23.

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Figure 23: Community ideas on reaching our target population

• Offer on the day AND later

• Signposting

• Follow up results

• How to approach GP

• Empowering

•Expert and personal stories

•Word of mouth

•Experts from any community

•Personal accounts culturallyrelevant

•What is hepatitis

•Risk factors/transmission/diagnosis

•Powerful message

•Treatment and prognosis

•Dispel myths

•Short length

•Visual >>written

•Optimistic

•Variable feedback on language

•Where people naturally gather:

•Religious settings

•Community centres

•GP surgery

•Schools

• Individual homes

•Awareness of timings: Fridayprayers, school

Venue Content

TestingWho?

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CHAPTER 8: FILM DEVELOPMENT FROM FOCUS GROUP

RESULTS

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INTRODUCTION

The main objective of the FG discussions was to obtain data on the opinion and knowledge of

South Asian migrants regarding CVH that could be used to develop an intervention (film) to

encourage testing for CVH when viewed in community settings. Analysis of the data from

these FGs identified five key themes, namely lack of awareness of CVH, testing (testing

processes - logistics and identifying those most likely to benefit from testing), access to

healthcare, attitude to health and stigma. These results are presented (chapter 6) and discussed

in detail in chapter 7. The key themes generated are summarised in Figure 21 and Figure 22.

Here, I discuss provide more detail on the processes involved in generating the film based on

this data with a summary of this process provided in Figure 24.

Figure 24: Summary of the film making process

DEVELOPMENT OF THE STORYLINE:

We undertook eight focus group discussions with men (n=26) and women (n=27) from South

Asian communities to understand their knowledge and views on CVH and the role of

community-based testing.

Thematic analysis led to the generation of key areas to address in the film, as summarised in

Figure 22 which provides an overview of the focus group findings [191, 192]. This analysis

made it clear there was less experience and knowledge of CVH than predicted. Additionally,

the importance of understanding the rationale and process of testing for CVH was emphasised

Identification of themes from FGs

Themes used to generate a storyline for

the film

Identification of

participants

Questions formed so storyline is addressaed

during filming

Filming of participants & multistep editing of footage

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by the community and so an explanation of CVH its transmission, diagnosis, testing and

treatment were required. This was broken down to key information domains (listed below) with

question formed for the film participants for each aspect.

It was also clear the community valued a story telling narrative with real life examples of people

with cultural congruency describing their experiences. As well as hearing from someone who

tested positive, they felt it was important to include the perspective of someone testing negative

and someone with a late diagnosis. Due to difficulties recruiting a patient currently on therapy,

a patient who had completed therapy was included. These stories were interspersed with expert

testimony (SA female and male Hepatology consultants). Due to the overlap in SA languages,

it was decided that the film would be in Urdu with English subtitles as well as an English

language version.

KEY DOMAINS TO BE COVERED IN THE FILM:

1. Knowledge domains aiming to correct widely held

misunderstandings on CVH:

a. What CVH is

b. Dispelling common myths that arose in FGs

c. Transmission and risk factors

d. Natural progression with emphasis on silent nature of this illness

e. Treatment availability

2. Testing:

a. Access to testing

b. What testing involves

3. Stigma

a. Focus on improving awareness will lessen stigma

4. Access

a. To develop confidence in understanding how to access services

b. Addressing language barriers

5. Personal stories:

a. Ease of testing

b. Silent nature of disease

c. Consequences of later diagnosis

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d. Addressing potential impact on the family

IDENTIFICATION OF PARTICIPANTS FOR THE FILM:

Initially, it was thought there would be experience of CVH in focus group participants and they

would be invited to participate in the film. As this was not the case, an ethics amendment was

submitted to allow me to approach patients in our hepatology outpatient clinic.

Focus group data showed there was value placed on real-life stories as well as expert opinion,

and that people identifiable as South Asian would make the message more impactful. It was

decided the following people identified from liver clinic as well as experts would meet these

criteria:

1. One male and one female expert to appeal to the broadest audience.

2. Patients:

a. One tested for CVH who was negative,

b. One with previous CVH complicated by hepatocellular carcinoma (HCC) and

subsequent liver transplant,

c. One positive for HCV who has finished treatment and is now cured without any

sequelae.

Experts were previously identified as established hepatology consultants practicing in the NHS

and of South Asian origin. Both experts had involvement in this study and were aware of the

aims and results of the focus group discussions.

On the basis of this, the experts and participants were filmed, each of whom generated around

60-90 minutes of recordings. Filming was done individually and open questions relating to

each domain above were asked and recorded. The questions were deliberately open to make

verbal responses more natural on film and to avoid a question and answer type of setting. These

various film extracts were then transcribed allowing grouping of statements by theme and

according to our objectives with any duplicate information removed and any new issues

addressed. This cycle was completed multiple times. The most appropriate and impactful

statements for each domain were identified and highlighted for inclusion in the film. Some

features (such as explaining the nature of CVH were better delivered by certain participants, in

148

this case experts). A first draft of the film was then created and subsequently edited for content

and flow. This was then repeated until a final version was created which was shown to

stakeholders, our PPI group and a validation cohort (cohort 3) to ensure understanding and

suitability of language. It was also ensured that all participants were in the final version for a

similar amount of time, to ensure all voices were heard. Voice overs were used on the advice

of our film maker for consistency.

The finished film was a mixture of two hepatology experts explaining what CVH is, modes of

transmission and how to access testing. Additionally, the film included the testimonies of first-

generation South Asian migrants with experience of testing for CVH, including those who

tested negative and those who tested positive and who have been treated. The film addressed

the knowledge, concerns, cultural facilitators and barriers towards testing that were identified

in the focus group discussions [192]. The film was 12 minutes long and two versions were

produced, one in Urdu with English subtitles and the other in English and these can be viewed

online (English: https://youtu.be/K3AYyZ3uHro; Urdu with English subtitles:

https://youtu.be/dapPV4oul9s).

https://youtu.be/K3AYyZ3uHro

https://youtu.be/dapPV4oul9s

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SECTION C: STUDY 2 A NOVEL EDUCATIONAL

INTERVENTION TO IMPROVE THE UPTAKE OF TESTING FOR

VIRAL HEPATITIS IN SOUTH ASIANS: A FEASIBILITY STUDY

150

CHAPTER 9: FEASIBILITY STUDY: METHODS

151

INTRODUCTION

This second study utilised the culturally and linguistically tailored educational film, produced

in study one on the basis of focus group data, as the basis of an intervention to encourage CVH

testing amongst UK-based South Asians. To the best of my knowledge there is no data on the

effect of an educational film in promoting case-finding in CVH.

TRIAL DESIGN

This is a feasibility study for a pragmatic RCT to assess the effectiveness of a novel educational

film in increasing testing for CVH in a high-risk population (South Asians) in a community

setting.

The objectives of this second study were to:

1. Determine the feasibility of recruiting South Asian migrants to view a short educational

film on CVH.

2. Determine the success of this educational intervention in promoting the uptake of

testing for CVH in various community settings familiar to our target population.

3. Identify methodological issues to inform acceptability and format of a definitive

randomised controlled trial which will assess the efficacy of our novel educational

intervention

For this feasibility study the following were criteria for success:

a. Monitor patient consent, recruitment and retention rates for participants who attend the

screening of the film and who consent to be tested to inform future design and

methodological issues.

b. 40% (n=80) of participants watching the educational intervention will go on to be

tested. Previous pilot work in the area has shown that uptake of testing without an

intervention in community setting is 15-20% [193].

c. 90% of participants to see the educational intervention will complete the pre-film

questionnaire

d. 80% of participants will complete the post-film questionnaire

e. Feasibility methodological procedures, including collating data relating to patient

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experience of completing the questionnaires, and assessing patient feedback.

1. Study population

From February to June 2018, community centres, religious venues or primary care surgeries

were identified as potential recruitment sites. The target population was first generation South

Asian migrants aged over 18 years who could speak either English, Urdu or Hindi. The criteria

for South Asian was self-identifying as such. Those people aged less than 18 years, those

unable to consent and those failing to meet the inclusion criteria were excluded. These criteria

were deliberately broad to maximise the reach of our educational programme. Initially,

recruitment was based at sites in Surrey, South East England, UK. Due to concerns about

potential contamination of sites in this area, particularly from those who participated in the

design of this intervention, recruitment was widened to other centres i.e. Hounslow, London,

and the London Boroughs of Wandsworth and Merton.

The national Ethics approval process highlighted the fact that we were providing healthcare

education and so it was not felt appropriate to exclude anyone from viewing the film. Those

not matching study criteria were able to view the film but not recruited to provide research data

nor included in the analysis.

2. Regulatory Approvals

This study received ethical approval from the National Health Service Health Research

Authority (17/LO/0881) and was adopted on to the NIHR hepatology clinical trials network

portfolio (CPMS ID 34774). It was registered as a clinical trial, ISRCTN: 18001753.

3. Recruitment to film screening

Recruitment to this study was across three types of community domains namely religious

venues, community centres and primary care facilities. Guidance was sought from Public

Health England, who aided in the identification and approach to pivotal individuals and

organisations as well as key community-based sites to use as a recruitment base. Initial contact

from multi-lingual members of the research team was made with a key member of each target

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site (e.g. religious leader) to explain the nature of the study and determine interest in

participation as a recruitment venue. When agreement to participate with individual sites was

reached, the research team visited each venue to outline the project aims and further develop

community links. Participant information sheets in English and Urdu were delivered and a

suitable area to show the film identified.

An advertising campaign within each recruitment site promoted the film screening event in

conjunction with community leaders at each site. The community leaders were faith leaders in

religious venues (e.g. Imam), primary care physicians or community link workers who

organised social gatherings in our selected venues.

Two weeks prior to the date of scheduled film screening, multilingual posters were displayed

in each venue advertising a health educational event and providing contact details for the

research team. Further advertising depended on the type of venue:

a. Religious venue: The religious leader announced the event at key attendance times,

including main prayers sessions e.g. Friday for those participants of Muslim

background.

b. Community venue: The community centre organiser announced to the regular attendees

of the group that there was a health education event and a date announced.

c. Primary care: Health care staff identified patients who attended their facility from our

target population and distributed the participant information sheet and a leaflet

containing research team contacts as well as the date of film screening.

On the date agreed with each key site, I organised a healthcare educational event. The research

team explained the nature of the work and collected initial epidemiological data e.g. country

of origin and age group to determine eligibility for this study. After consenting, participants

completed a baseline proforma (see appendix 3) which included knowledge of CVH, attitude

to CVH testing as well as any prior diagnosis or treatment for CVH and information on

potential risk factors for infection. I obtained consent at the start of the film viewing session

with the research assistant available to facilitate translation if required to ensure valid informed

consent. Consent was obtained as per Good Clinical Practice standards.

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To facilitate the effective running of sessions, a minimum of 10 people were initially required

for each event. In order to manage potential requests for blood testing we planned to limit

attendance to 30 for each individual event. I planned events to run until the target recruitment

of 200 was reached. However, it was difficult to manage the planned numbers at each event

as participants generally turned up on the day without prior contact. This meant group sessions

had variable attendance (range n=1-80). I did not set a lower limit of attendance as it was felt

inappropriate to cancel events at late notice and would diminish the trust the research team

build up with the community.

After the film, I discussed with participants the possibility of testing for viral hepatitis. This

was a simple announcement mentioning an offer of testing by way of a finger prick blood test

then or at a later point. Thereafter, time was allocated for participants to ask any questions. It

was made clear that not testing is a choice and that this does not require any explanation from

the participant.

Following NICE guidelines [3], I utilised Dried Blood Spot testing (DBS) previously

successfully used in studying viral hepatitis in British-Chinese and British-Asian populations.

DBS testing entails a sample taken using a commercial kit that involves placing a drop of blood

on a prepared card. The sample provided will be tested for:

1) HCV antibody and

2) Confirmation of positive results

3) HCV RNA

4) HBV surface antigen

5) HBV core Antibody

I informed the participants that they can approach us in a separate area if they wish to discuss

the possibility further otherwise they were free to leave. Participants interested in testing were

given the opportunity to discuss individually with the research team and ask any questions.

There was reiteration of an option to test on the day and an option to come back at a later date

for testing for those who need more time to consider their decision. There was then an

explanation of how results will be given. I explained all Dried Blood Spot testing (DBS) testing

cards will be returned to the testing laboratory on the day of testing and not stored in the trust

or by the research team.

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Separate testing rooms for women and men were offered and there were appropriately trained

voluntary health care advocates who speak Urdu and Hindi. Measures were taken to ensure

that participants giving informed consent do not feel coerced by the involvement of any

community or religious leaders.

4. Pre and post film questionnaires

To assess the effectiveness of the film, and to determine baseline opinion on CVH, pre- and

post-film questionnaires were distributed to those who viewed educational film to assess for

any change in knowledge and attitude to CVH testing.

Questionnaires were designed using a combination of externally validated existing questions,

as well as those designed for this study including knowledge of CVH, prior experience, utility

of the film and intention to test (see appendix 4). Answers were provided on a five point Likert

scale, from strongly disagree to strongly agree.

5. Chronic Viral Hepatitis (CVH) Testing

As this study was community based, finger prick testing using dried blood spot (DBS) testing

kits were utilised. These kits test for Hepatitis B surface antigen (HBsAg), Hepatitis B core

antibody (HBcAb), Hepatitis C (HCV) antibody and HCV RNA, and have high sensitivity and

specificity [194]. Each sample was tested in an accredited NHS laboratory, with results

available within 7-10 days.

DBS testing has been validated in health studies. It is recommended in national policy,

particularly where conventional phlebotomy may be challenging, with reported sensitivity and

specificity rates for HBsAg, HBcAb and HCV Ab close to 100% [36, 166, 195]. Genotyping

and HCV RNA testing can also be performed on DBS kits, with high levels of concordance to

conventional serology [196]. Internal validation data from the Central Manchester laboratories

who performed our tests is provided in Table 15.

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Test Sensitivity % Specificity %

HCV Antibody 100 (96.5-100) 100 (97.6-100)

HCV RNA 100 (95.1-100) 100 (96.1-100)

HBsAg 100 (96.4-100) 100 (97.5-100)

Anti-HBc 87* (79.2-92.7) 100 (97.1-100)

Table 15: Sensitivity and Specificity of the DBS test kit

*100% in HBsAg +, 87% in HBsAg –

Testing was offered to participants immediately after the film was shown in a separate private

area of the venue. A return visit to the venue was scheduled for a week later, if the number

testing was not manageable on the day or if any participants wanted more time to consider

testing. Where there was oversubscription I tested as many as feasible on the day and arranged

to return the following week. This happened in two venues, one community venue and one

religious.

Testing was consented for separately by me (written informed consent) in private. Translators

were available (Urdu and Hindi from the research team with Bengali help from community

workers) if required. The consent process involved agreement on how the test results would be

given and specific consent for informing their usual primary care physician.

All patients completed a proforma that included preferred method of contact. I explained results

will be available 14 days after testing. We felt that if only those who test positive are informed

of the results in person this will be noticed by the community and make the process difficult

for those who test positive. When positive results needed to be given we ensure all participants

were given opportunity to ask questions and have an explanation of the findings. Consent will

be taken to inform their usual GP. There was also an explanation of the onward referral to

hospital-based services for further assessment with a view to treatment. The patient were

offered a referral to Royal Surrey County Hospital viral hepatitis service unless they express a

preference for another site. The Royal Surrey County Hospital is the lead site for HCV

Operational Delivery Network (ODN) and will coordinate their care.

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6. Statistical analysis

The target sample size of 200 was derived to provide an estimate of the proportion seeking

testing following the intervention, with suitable precision, and provides for a half-width of a

95% confidence interval for this proportion in the region of 6-7% over a wide range (20-80%)

of possible values for this proportion.

As this is a feasibility study, the results are reported as mainly descriptive statistics. Participant

characteristics are presented by percentage for categorical variables. Two-sided 95%

confidence intervals, where applicable, were calculated using StataIC 15.1 (Statacorp LP,

College Station, TX).

CONTRIBUTIONS

I ran recruitment sessions, identifying sites, advertising sessions and facilitating attendance of

participants. At the recruitment events I consented the participants for the film screening as

well as blood testing and gathered demographic and questionnaire data. All data were analysed

by me with the supervision of a statistician (Professor Skene, University of Surrey).

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CHAPTER 10: FEASIBILITY STUDY: RESULTS

159

RESULTS

A total of two hundred and twenty-one participants were recruited to view the educational film,

across fourteen different venues. Two participants were excluded as they did not meet the

inclusion criteria (not first generation migrants). Therefore, two hundred and nineteen were

included in the study (see Figure 25). The majority were recruited from religious (n=112; 51%)

or community settings (n=98; 45%), and a minority from primary care (n=9; 4%).

GENERAL CHARACTERISTICS

Demographic details, including age and highest educational attainment, were collected for

study participants and are illustrated in Table 16. There were similar numbers of females

(n=117) and males (n=102) who viewed the educational film. The majority were older adults

(61 years of age or older). Younger adults (18-24 years of age) were particularly under-

represented. The largest group of participants were originally from India (47%) and Pakistan

(39%). There was no information available on educational attainment for around one fifth of

the cohort, but otherwise the cohort had completed high school (29%), college (27%) or

university (14%). Smaller numbers received professional training (9%).

TESTING FOR CVH

One hundred and eighty-four of the two hundred and nineteen (84%) participants tested for

CVH after viewing our film (Figure 25). The overall proportion of participants testing for CVH

was similar across all types of site and is shown in Figure 27. Testing uptake was similar among

males and females (86% and 82% respectively). Testing uptake appeared to be lower in

younger age groups (less than 40 years) but interpretation of this is limited by the relatively

few numbers in these age groups and is reflected in the wide confidence intervals. Testing did

seem lower in Bangladeshi population than Indian and Pakistani (76%, 86% and 82%

respectively). This could again relate to the smaller cohort of Bangladeshi participants as

determined by the large confidence intervals. However, with retrospect, the film could appear

more focussed to India and Pakistan with the use of language and people in the film. There did

not appear to be any association with educational attainment and testing.

160

RESULTS OF PRE- AND POST-INTERVENTION QUESTIONNAIRES

Of the two hundred and nineteen who viewed the educational film, 78% (n=170) completed

the pre-intervention questionnaire with 70% (n=153) completing the post-intervention

questionnaire. A questionnaire was judged completed if any question was answered pre and

post film. However, many of the questionnaires had missing data points for individual

questions either not answered at all or answered only pre or post film therefore having no

comparator. Data were available for 65% (n=143) who filled in both questionnaires. This

overall sample is skewed to those who tested, with 82% (n=118) of questionnaire replies

coming from those who tested for CVH. However, this is in keeping with the fact that a similar

percentage of participants who viewed the film requested CVH testing. Of the 219 watching

the film, 39 (18%) did not complete either questionnaire (87% of whom tested for CVH and

13% who did not).

Given only a small group of participants did not go on to take up testing, combined with the

missing data points in those questionnaires that were completed, there is limited information

which can be gathered from this data. A detailed breakdown of the replies to each question in

tabular form is provided for reference in appendix 5 with an overview of findings of note

provided below.

Despite the limitations of the questionnaire data, some trends emerged. Very few (1%) of those

who replied disagreed that the film was useful with an 88% response rate to this question.

Regarding finding the film easy to understand, there was a 92% response rate with 90%

agreeing (90% tested; 88% non-tested). Most people agreed the film was relevant to them

(77%) which was similar for both cohorts.

Some questions did have a high response rate, including where participants were asked if they

should do what they can to remain healthy, even when busy with life tasks. All participants

agreed with this sentiment, with <5% not responding. Similar results were seen when asked

whether health checks are important even when well, with few invalid responses (<5% each

group). Of the valid responses, the vast majority agreed (100% tested and 96% non-tested).

High response rates were also seen when asked whether healthcare in the local community was

preferable to travelling to a hospital, with the majority of respondents in both groups (60%)

161

agreed they preferred local community based healthcare. Similar proportions (60% tested; 63%

non-tested) felt it was the doctors role to tell them what to do for their health. This is in keeping

with results in study 1, where the FG participants emphasised the role of their doctor above

themselves in health decisions.

Participants were also asked to rate their confidence in understanding what CVH is. One

hundred and twenty participants responded (85%), with a similar proportion responding

whether they tested for CVH or not. Overall, knowledge was unchanged pre- and post-film in

31% (n=37). Knowledge improved (from either neutral/not confident to confident) post-film

in 58% (n=70). Participants did recognise CVH can cause severe health problems, with 80%

recognising this, with few invalid response rates (8% tested and 8% non-tested). This was a

key message of the film.

Few patients had any personal experience of CVH (n=8; 7% in the tested group and n=1; 4%

in the non-testing group). This was in keeping with findings in our focus group work.

Results of CVH testing

Of the n=184 who tested for CVH having viewed the film, sixteen (all from religious venues)

required a repeat test as the original result was inconclusive (equivocal result, smaller sample

size affecting sensitivity of the test) but opted not to have this done. As there was no clear result

of testing, I have excluded these participants from this analysis.

Fourteen (8.3%) of the one hundred and sixty eight who viewed the film and tested with valid

results had exposure to CVH (see Figure 28). We found a HBV exposure rate of 6.0% (n=10

including n=1 active infection) and HCV exposure of 2.4% (n=4). Active infections for both

HCV and HBV were 0.6% (n=1 for each).

There were no infections detected in primary care patients and no cases of HCV exposure in

community venues. There were, however, three cases of previous HBV exposure (HBcAb) and

one active (HBsAg) HBV infection. The three patients with HCV exposure were discovered

in religious venues and included one active infection. In addition, six patients were found to

have HBV exposure. All patients who were HBsAg surface antigen positive or had active HCV

162

viraemia were counselled and successfully linked to care and referred directly to their local

secondary care provider for further management and subsequent treatment.

Figure 25: Recruitment by type of site. The total number recruited to view the educational film, with

those excluded as not meeting study criteria are shown by type of venue

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Community

Recruitment n=

Religious

Recruitment n=

Primary Care

Recruitment n=

Total

Recruitment

n=

Total Recruitment

%

Gender

Males 23 74 5 102 47%

Females 75 38 4 117 53%

Age

18-24 - 7 - 7 4%

25-40 1 24 4 29 13%

41-50 1 16 1 18 8%

51-60 8 17 2 27 12%

61+ 87 45 2 134 61%

unknown^ 1 3 - 4 2%

Country of Origin

India 84 17 1 102 47%

Pakistan 3 74 8 85 39%

Bangladesh 6 19 - 25 11%

Other South Asian 5 2 - 7 3%

Highest Educational Attainment

School 34 29 - 63 29%

College 20 38 2 60 27%

University 10 16 4 30 14%

Professional 11 6 3 20 9%

Unknown 23 23 - 46 21%

Table 16: Characteristics of participants recruited to view the educational film, shown by type of site.

164

Figure 26: Characteristics of those testing for CVH after viewing our educational film. This describes

the percentage tested by gender, age, country of origin and educational attainment. The 95% confidence

intervals are shown.

Figure 27: Proportion of participants testing for CVH after viewing the film by site, including the 2

sided 95% confidence interval

*97.5% one-sided confidence interval

0

10

20

30

40

50

60

70

80

90

100

% T

este

d

Characteristics of those testing for CVH after viewing educational

film (%)

0

10

20

30

40

50

60

70

80

90

100

Whole Cohort Community Religious Primary Care*

% T

este

d

Testing for CVH by venue type (%)

165

Figure 28: Cases of exposure to CVH (including HBV and HCV) in those testing having viewed the

film with percentage of the overall tested cohort shown

Word of mouth testing uptake

During a pre-arranged repeat CVH testing visit at both a community and religious

venue to test participants who had required more time to consider testing post film

screening, members of the community who had not seen our film approached the

research team to request testing (n=31 and n=14 respectively). Due to the nature of

these people turning up without prior notice, full demographic details were not

available other than gender and age. In the religious setting most (86%; n=12) were

males which was a similar trend seen in the whole cohort and likely relates to the type

of religious venue we used. Half were aged over 61 years which is again similar to the

cohort viewing the film. The gender split was more equal in community venue (55%

male) and this cohort were almost all older (87%). A summary of the available

characteristics of these patients is shown in Table 17.

I discussed testing with each individual and obtained written informed consent prior to

testing. All participants who approached us in this manner consented to testing. All

CVH exposure

n=14 (8.3%)

HBV exposure

n=10 (6.0%)

HBsAg +

n=1

(0.6%)

HBcAb +

n=9

(5.4%)

HCV exposure

n=4 (2.4%)

HCV Ab +

n=3

(1.8%)

HCV RNA +

n=1

(0.6%)

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participants mentioned their awareness of our community work and the educational

film specifically. Anecdotally, they were informed about the nature of CVH, its risk

factors for transmission and indeed stated they had obtained this information from

others who had viewed the film.

Of this cohort, two patients in the community setting tested positive for prior exposure

to HBV, and a further patient from the religious venue also was core antibody positive

(6.7% of this cohort). A single patient (2.2%) from the religious site was positive for

active HBV (HBsAg positive).

DEMOGRAPHIC TESTED (N=) DEMOGRAPHIC TESTED (N=)

Religious Community

Whole Cohort 14 Whole Cohort 31

Gender

Males 12 Males 17

Females 2 Females 14

Age

18-24 2 18-24 0

25-40 1 25-40 0

41-50 2 41-50 3

51-60 3 51-60 1

61+ 6 61+ 27

Table 17: Characteristics of those additional participants testing for CVH without viewing the film

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CHAPTER 11: FEASIBILITY STUDY: DISCUSSION

168

PRINCIPAL FINDINGS

1. FILM VIEWING AND TESTING UPTAKE

The South Asian migrant population in the UK represent a higher-risk group that are

often unaware of their risk for CVH. This study demonstrated the feasibility of reaching

the target audience and recruiting individuals from South Asian populations to view a

short educational film on CVH in community venues, with subsequent uptake of CVH

testing and treatment if required.

A marker of the success of this study was in recruiting over 200 people to view the

educational film. This number was pre-determined as part of the statistical analysis as

being able to provide an estimate of the proportion seeking testing following the

intervention with suitable precision. Additionally, the criteria for success whereby 40%

(80 people) who viewed the film would get tested for CVH was far exceeded.

The study targeted inner city areas (London) that were relatively deprived as well as

more affluent suburban areas of South-East England (Surrey) and did not find any

difference in ability to recruit to view the film nor uptake of testing for CVH. A

particular success of this work was in recruiting female participants to the film

screening as well as testing for CVH, as females have previously been under-

represented in other work [11, 122].

Whilst there was recruitment across a variety of religious venues, these were mainly

mosques and males were over-represented. On the other hand, the community venues

were mainly older Indian people. However, it was notable that recruitment in the

primary care arm was challenging compared to the other types of venue, with only 4%

of recruited patients in this arm. This may reflect a weakness in study design as

recruitment in this arm was different to the other two cohorts where recruitment was

led by the study team. In primary care, we relied on health care professionals

identifying potential participants (SA people) and distributing patient information

sheets without discussion of the nature of the study. This included a date and time for

film screenings. This meant no one from the study team could discuss at the time and

the onus was on participants to contact us without prior meeting. It was also not clear

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how many people did receive the information and given appointment times in primary

care are short there may have been time constraints in distributing the study material.

Furthermore, patients attending primary care surgeries may have had other concerns

over their health at the time or the clinician may have felt raising the topic of a clinical

trial not appropriate (e.g. patients attending receiving a cancer diagnosis).

The majority (86%) of the people recruited to view the film were from either India

(47%) or Pakistan (36%). The other main group recruited were from Bangladesh (11%).

Both genders were well represented with 53% of those recruited to view the film

female. The recruitment of females was a particular target for this study as they have

been under-represented in other work [11]. Those recruited to watch the film were

mainly older people, with 61% aged 61 years or more. This is at odds with the census

data in Surrey and London which shows that those aged over 65 represent a smaller

proportion of the Asian population than younger age groups [74].

Whilst there did not appear to be any relationship between film venue, gender or level

of education and decision-to-test, age appeared linked. However, the study population

was skewed towards relatively older participants. This is likely due to some of the

recruitment sites being clubs for retired people and meetings often being held in the

week during day time when younger people may have childcare or work

responsibilities. There was an apparent lower uptake of testing in younger age groups

(57% for 18-24 year olds and 66% 25-40 year olds) compared with the cohort as a

whole (84%). However, the small numbers viewing the film in these age range (n=7;

n=29 respectively) precludes robust statistical inference.

Whilst a smaller proportion of those viewing the film were from Bangladesh (11%),

this cohort did seem to have less uptake of subsequent testing at 76%. Whilst this figure

is still high, it may be the focus of the film, particularly linguistically, is towards those

of Indian or Pakistani heritage and so there was less identification with it amongst those

from Bangladesh.

Notably, a number of participants (n=45) requested testing for CVH without having

seen the educational intervention. This may suggest other factors including community

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endorsement may be relevant in deciding to test. Anecdotally, these participants had an

understanding of the risk factors for CVH and had knowledge of the wider work we

had been doing in the community. This was ascertained at the point of consent for

testing. Whilst possible the offer to test was taken up independently of the information

in the educational film, our experience in this study tells us that word-of-mouth spread

of information in this community appears critical and reasons given to test by these

participants included the film and its content.

2. QUESTIONNAIRE DATA

Of the two hundred and nineteen who viewed the educational film, 78% (n=170)

completed the pre-intervention questionnaire with 70% (n=153) completing the post-

intervention questionnaire, which was less than our pre-determined criteria for success

(90% and 80% respectively).

Whilst assistance was provided in either English or Urdu, the volume of paperwork

overall (consent forms, demographic information and questionnaires) was burdensome

to the participants and this will need to be addressed in the design of further studies.

The questionnaires were poorly filled out in terms of proportion of participants

completing pre and post to allow for comparison and also gaps with individual

questions not being answered and this limited data analysis and interpretation. This was

compounded by the small number of participants not testing after viewing the film.

With retrospect, the questionnaire was too long in an attempt to gather data on a variety

of parameters that were felt relevant to participants decision making as part of this study

such as attitude to health and healthcare, stigma and awareness of CVH. It was felt that

these domains may influence decision to test. Whilst the problems outlined here mean

that it was not possible to provide robust analysis of the questionnaire data, there were

some broad trends that were noted. There were some questions that were well filled out

and where the responses were consistent. An example is when asked about whether it

was important to do what they could to protect themselves from illness there was a high

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response rate, over 95% of the whole cohort. This, and the strong preponderance to

agreeing with this sentiment, whether participants tested or not, suggests a degree of

proactivity and personal responsibility towards health. Alongside this, similar results in

terms of high response rates and high proportions of both tested and non-tested cohorts

agreeing with the importance of regular health checks even if feeling well were seen.

These findings, however, are at odds with our focus group data in study one about

regular health checks when asymptomatic. This could represent a selection bias, with

those attending a health education event self-selected as those who make effort to

safeguard their health.

Attitudes to healthcare provision and healthcare professionals were also explored as

they were raised as a key theme in study 1. Firstly, most people were in favour of

healthcare in the local community rather than hospitals. This was asked to ensure any

lack of uptake of testing for CVH after our film was not related to the community based

setting we used. Similarly most people agreed it was the role of the doctor agreed it was

to tell them what to do for their health.

Previous testing for CVH may well affect testing in this study and so this was asked

specifically. Unfortunately, the low levels of response, alongside the small numbers not

testing it is not possible to provide analysis of this.

Some topics had been structured to include multiple questions e.g. transmission, each

requiring a response. At each point there were many invalid responses and I wonder

whether this related to confusion on how to fill out the questionnaire with people

perhaps thinking they were to fill out only one section or the ‘most correct option’.

In order to check the validity of the questionnaire we included questions on the ease of

filling it in. Overall, most people did not report problems. Whilst some people changed

their mind after the film, I wonder if this is related to the knowledge aspects and feeling

more knowledgeable after, as most people who changed their mind changed to say they

did not have difficulties.

Regarding the film itself, all but one of the valid responses found the film useful. The

invalid responses were at the lower end of what we saw across all questions. Most also

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found the film easy to understand and felt it relevant. It is possible this question was

not filled in honestly as the research team were present but given the very high uptake

of testing, this seems less likely.

3. RESULTS OF TESTING

Of the n=184 who tested for CVH having viewed the film, sixteen (all from religious

venues) required a repeat test as the original result was inconclusive (equivocal result,

smaller sample size affecting sensitivity of the test) but opted not to have this done. As

there was no clear result of testing, I have excluded these participants from the results

analysis. However, this is an important group in terms of emphasising the need for

adequate sample size being obtained in large volume events and to understand why

these participants did not have a repeat test. Those with a smaller sample size came

with a result of negative but with a description sensitivity may be affected by the small

sample size. There is no quantification of the effects of this and this concept can be

difficult for people to understand. Perhaps this effect is amplified by them feeling well

and attending a screening test and the presumed negative test was good enough for

reassurance. It is also possible that these people got retested elsewhere e.g. primary care

and we are unable to determine this.

Fourteen (8.3%) of the one hundred and sixty eight who viewed the film and tested with

valid results had exposure to CVH (see Figure 28). We found a HBV exposure rate of

6.0% (n=10 including n=1 active infection) and HCV exposure of 2.4% (n=4). Active

infections for both HCV and HBV were 0.6% (n=1 for each).

There were no infections with either HBV or HCV detected in primary care patients,

although as noted previously the sample size was very small. There were no cases of

HCV exposure in the community venues. There were, however, three cases of previous

HBV exposure (HBcAb) and one active (HBsAg) HBV infection.

The three patients with HCV exposure were discovered in religious venues and

included one active infection. In addition, six patients were found to have HBV

exposure. All patients who were HBsAg surface antigen positive or had active HCV

viraemia were counselled and successfully linked to care. However, this proved to be

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time intensive and if there were higher numbers of positive patients this would have

proved challenging to manage.

Regards the participants who approached us for testing without viewing the film (word

of mouth cohort), three were hepatitis B core positive and one had active HBV

infection. Again, this patient was linked to care. This cohort demonstrates the value of

community based research, particularly with community members as key stakeholders.

Word of mouth spread of information is important in this community. It is possible the

involvement of community leaders added validation to our presence. Positive

experience of the film events spread quickly and did rapidly lead to more people testing.

SUMMARY OF FINDINGS

1. Understanding of CVH

Based on the results of the focus group work in study 1, it was apparent there was less

awareness of CVH in this community than we hypothesised. This was apparent across

multiple domains including knowledge on what CVH is, its distinction from jaundice

as well as the potential asymptomatic nature of infection. Unsurprisingly, this was

associated with a lack of awareness of the increased risk of CVH infection in South

Asian people. In particular there was misunderstanding about CVH being a condition

of poor sanitation and was spread through the faeco oral route. This, and the fact that

there are potential ongoing risk factors for CVH acquisition were the key messages of

the film. Whilst this was not a trial designed to assess the effectiveness of the film in

promoting testing for CVH, there was a higher than predicted uptake of testing. It is not

necessarily the case that this film provided knowledge to the extent it became the sole

factor for people testing, however, there were improvement in knowledge parameters

after the film. Furthermore, whilst recognising the issues with the questionnaire, there

was a positive response to the question asking whether the film was useful.

As the film provided education on the risk factors for infection acquisition, it may be it

has ongoing advantages out with testing per se for ongoing risk management for those

who viewed the film. Also, it cannot be ascertained whether some of those who did not

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test with us spoke to other healthcare providers such as their own GP for advice on risk

or indeed testing.

A particular feature notable through this work in the SA community across all sites was

the role of word of mouth spread of information and the value this had for people. It

would therefore seem possible that knowledge gained will spread more widely in the

community beyond just those who viewed the film. I believe we saw evidence of this

in those who came forward for testing despite not having seen the film. When

consenting these people it was clear they had knowledge of our work as well as

knowledge of the particular messages given in the film.

While not strictly relating to understanding of CVH specifically, it was clear not all

people in this study had an understanding of healthcare access and provision in the UK

and this film provided some information on this which could have reach beyond the

scope of this project by improving health literacy in general. The health belief model

has been used to guide health promotion and disease prevention programs. This model

defines the key factors that influence health behaviours as an individual's perceived

susceptibility to illness, belief of consequence or severity of illness, the potential

benefits and barriers to action and self-efficacy i.e. confidence in their ability to

succeed.

2. Willingness to engage in community-based activities

Overall, the South Asian population were willing to engage with community based

healthcare. This was reflected in not only successful recruitment for both the film and

subsequent testing, but also in the links established with community and religious

groups in both phases of this work. In both the earlier focus group and subsequent

feasibility study trial participants valued care in their local community. Whilst many

stated a willingness to travel where required it was felt more favourable in logistics,

cost (financial and time) and engagement to provide care in familiar settings. Many

participants felt this was more important in migrant groups, where some people may

struggle to navigate traditional healthcare and travel and this was not purely a language

issue. It was repeatedly mentioned that when feeling well any strategy to promote

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engagement would need to consider patient convenience particularly for people with

work and family commitments. Conceptually, therefore, community based healthcare

whether screening, case-finding or even engagement with healthcare professionals

should improve access. By tailoring the venues used to those culturally relevant to each

population and thus having familiarity can also have a role in improving the confidence,

comfort, engagement and ultimately improved experience of patients which has

potential to improve other health related metrics.

Recruitment was successful in both affluent and more deprived regions. However,

recruitment in primary care was poorer than non-traditional community healthcare

settings. This is somewhat at odds with the expressed views in both studies that a major

role of doctors is to tell people what to do for their health and in recommending testing

if needed. I believe the method of recruitment in primary care, being distinct from other

venue types, is a confounder for these results. Exploring alternative methods would be

important and I do not think there is enough data to preclude primary care venues from

being a recruitment venue in future work.

A particular success of this work was in recruiting female participants to both the focus

groups and the film screening as well as testing for CVH, as females have been under-

represented in other work [11, 122]. This was possible with the help of community

volunteers helping identify venues and groups set up specifically to help new female

migrants such as English language classes held during school hours. These volunteers

also promoted our studies within their social and family networks through word of

mouth.

The study cohort was skewed towards older participants. Whilst this may mean our

studies did not have the same reach to younger people, this is not certain. An alternative

explanation would be recruitment occurring during daytime where younger people are

working. On the occasions where recruitment was at weekends there were more

younger people present proportionately than daytime during the week.

Whilst engagement with both studies was good, there was an issue in study two with

paperwork. This was felt to be burdensome. The paperwork consisted of a consent form

for viewing the film, demographic information, pre and post film questionnaires and

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consent form for testing where relevant. In retrospect, the pre and post film

questionnaires were too long and some questions were misinterpreted. Initially, the

questionaries were designed to encapsulate key domains – knowledge, efficacy,

attitudes to healthcare, experience of testing and intention to test. Whilst this would be

useful data, the time taken to complete was off putting especially to older people. This

resulted in failure to meet the pre-defined target for questionnaire completion. There

were also many invalid responses within each questionnaire i.e. part completed and

many answers incongruous with outcomes e.g. stating they will never be tested and

testing on the day. However, there were some questions with high response rates that

did yield meaningful results, simplifying these questionnaires would potentially create

more complete therefore meaningful data.

A key factor in both these studies was recognising the effect of word of mouth spread

of information in this community. Discussion within the community about our work

was crucial to recruitment. This was done through personal networks but also through

existing groups and clubs. This, in my opinion, is a contributing factor for the poor

recruitment in primary care where the study was advertised by a healthcare professional

handing an information sheet to potential participants. The spread of information

between community members was particularly apparent amongst those venues where

we returned to complete further testing where demand was high. On each occasion

where we revisited a site, we gave a date a week in the future and saw high levels of

attendees requesting testing. Many of these were people who had viewed the film the

week before but as discussed many had not attended to see the film but were aware of

its key messages. Thus, community involvement though PPI and stakeholder initiatives

will be mandatory for future studies in this community.

3. Conducting a feasibility study using a short educational film, that could form

the basis for an RCT.

This feasibility study generated useful results. Overall, recruitment to view the film

and subsequent testing were higher than predicted. There were, however, areas where

adaptation of study methods and pathways could be adapted in order to facilitate the

design of a randomised control trial of the effectiveness of this educational film in

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promoting testing for CVH in community settings. Key issues to resolve prior to further

work are identified in table 61.

Table 18: Feasibility study: Specific areas of concern and proposed details for future proposed scale up

of RCT

Trial activity Specific area of concern highlighted in

feasibility study

Proposed solution for scale up to trial

Recruitment Low primary care recruitment number Targeted recruitment through:

(i) use of electronic health records data

(ii) media including national/global key opinion

leaders promoting testing e.g. Bollywood

personality

(iii) pathway finder to facilitating link between

recruitment and primary care ideally from within the

community

Participants mainly recruited from older

age groups

(i) explore delivery in new venues e.g. youth clubs,

community groups, antenatal clinics in high south

Asian populations as a venue to improve

engagement with women

(ii) peer lead recruitment

(iii) promote social networks

(iv) media including national/global key opinion

leaders promoting testing e.g. Bollywood

personality

(v) utilisation of social media platforms and

smartphone apps particularly for the younger

population

Results Hard to follow up with participants after

testing

Undertake PPI to explore ways to simplify follow

up:

(i) via text messaging

(ii) coordination via key link personnel through e.g.

pathway finders supported by clinical

commissioning groups.

(iv) point of care testing results for hepatitis C RNA

(v) one stop shop fibroscan

Low rates of questionnaire completion (i) simplify questionnaire

(ii) real time onsite completion using tablet or key

pads

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COMPARISON WITH EXISTING LITERATURE

Given the poor health related outcomes for patients with liver disease, there are efforts

to find cases that have previously been undiagnosed. Chronic viral hepatitis is one of

the most common aetiologies of liver disease and therefore case-finding is a national

and international priority. In the UK, NICE advocates community-based testing of

populations at higher risk for CVH but do not make recommendations on how this is

best achieved due to a lack of clear evidence.

1. Screening Uptake

The existing literature on interventions to improve participation in healthcare screening,

of which case-finding is a subgroup, principally relates to cancer diagnoses [45]. Many

programs actively promote screening by utilising resources to facilitate uptake and

offering financial incentives (e.g. free testing in healthcare systems with direct charges

to patients) [134]. Despite the removal of logistic and financial barriers, uptake of

screening tests often remains suboptimal. This does mirror health service uptake in

general with pockets of the population showing poorer coverage [114]. Across

screening programs there are identified logistical, psychological and cultural barriers

and their importance in health behaviour is recognised [138]. Arguably, these factors

are more important in screening where there is a lack of driver to seek health care as

the population targeted is asymptomatic. BAME groups are more likely to have lower

attendance at various screening programs as well as a poorer experience of care in both

the UK and USA [139-146] . Attempts to improve uptake have been made by instituting

various interventions, often based on single screening modalities or single populations

(i.e. akin to case-finding) [147-149].

2. Recruitment to Clinical Trials Aiming to Improve Uptake of Screening

The largest community testing program based in New York City, the BfreeNYC

project, undertaken between 2004 and 2008 tested almost 9000 migrants (mainly of

Chinese and Korean descent) for HBV. This was a large-scale program advertised

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extensively including through major media outlets and championed by city councillors.

Stigma was not reported from the wider community during the advertising process, and

indeed members of the Asian community associated less stigma towards viral hepatitis

because of the awareness-raising programme [172, 173]. This suggests raising

awareness through education has wider ongoing benefits than pure case-finding.

Whilst our studies do not have a control (i.e. non-intervention arm), we found high

levels of participation in our work. The reasons for this cannot be elucidated from our

data but could include the familiarity people had with our earlier work in study 1 where

trust was built within the community [191] and resultant word of mouth spread within

the area, the convenience of using local facilities and in particular facilities know to

study participants (e.g. their own places of worship), the advertisement of events as

healthcare education (there was no initial mention of testing) and perhaps key the

involvement of SA people of ‘standing’ within the local community such as community

workers who provide English classes and advertising by religious leaders at prayers.

The help given by community workers was mainly in advertising the event to people in

the community through their networks and classes. They also attended most of the film

screenings but as participants rather than identifiably as members of the research team

and did not administer any aspects of the studies. We believe their role was key to

providing the research team access to the community and adding trust but feel their role

was distinct from the lay health workers often used in studies albeit with some overlap.

3. Types of Intervention

Existing data on improving healthcare screening has limitations in large part due to

heterogeneity of methods and a lack of rigorous assessment of the interventions used.

There are, however, some important findings in the literature particularly where the

focus is on interventions to improve uptake of screening in specific subgroups of

populations with lower uptake, rather than increasing general screening rates [147].

Furthermore, a substantial amount of the data available comes from North America

where financial and organisational factors are not in keeping with those in the UK. In

general though, it would appear culturally relevant interventions along with those that

minimise logistical difficulties have the most effect [147]. As part of this work, I have

performed a systematic review of interventions to improve screening uptake amongst

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ethnic minorities [151]. There was little UK data as was also the case in other reviews.

The heterogeneity of groups and methodology of trials poses a challenge in analysing

the data available. However, I still found themes when reviewing the data by type of

intervention. As seen in previous studies, multifaceted interventions were broadly

successful as were group-education sessions and media interventions. Apparently less

successful were lay-health worker (LHW) interventions; despite being the most

common intervention type. This is in keeping with our findings that was culturally

tailored group education via a film, based in local community settings. Whilst we did

have community workers aid in recruitment, this role was distinct from LHWs in these

studies.

Given LHWs are often from the community being studied and are therefore aware of

cultural and local factors at play the idea seems appealing in studies of the type we

carried out. A meta-analysis of interventions to promote HBV testing where nearly half

(7/15) of studies analysed utilised LHWs. Six of the seven LHW-led interventions were

one off activities that delivered educational content tailored to a particular community’s

cultural and social context [169, 175-180]. All studies found LHW-led educational

interventions had a positive effect on self-reported rates HBV screening (RR = 2.68, CI

95; 1.82–3.93) compared to no HBV specific educational interventions; however, the

results were heterogeneous in study design and intervention setting (three were home

visits, and three were delivered at a community-based organisation). The LHWs in all

six studies received training to help tailor the educational intervention which was

relatively simple and low cost. Analysis found the interventions acceptable to the study

participants and to the LHWs. While the importance of cultural context in developing

interventions to improve HBV screening in high-risk populations and the usefulness of

community settings in the delivery of healthcare is important, the low-cost nature of

this intervention could facilitate its used in resource limited settings. However, these

LHW studies rely on self-report of testing and do not report on results of testing. The

accuracy of this is not established. Additionally, all the studies in this meta-analysis

were conducted in North America and it is not clear whether this data would be

transferable to the different healthcare system in the UK. However, in future work of

this type it may be valuable to further develop the role of the community workers we

used to assess their role as LHWs as the low-cost nature of this could be rolled out at

scale. I do feel there remains a role for physician input in studies of this type, and our

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presence did add credence even in the focus group work that was not directly medical.

4. Community Based Testing

A community based UK study that used an outreach testing intervention that provided

education on HCV that also aimed to investigate the prevalence of HCV in a migrant

Pakistani population did report difficulties recruiting target numbers, particularly

struggling to recruit females with 85% of recruited patients male despite attempts to

target the female population [11]. Other UK based studies targeting SA people

recruited in mosque and community centres but similar to our work, it is unclear how

many people were reached by the advertising campaign and whilst the majority of those

attending did get tested, this may represent a selection bias as it may be those already

interested in health screening or hepatitis attended [161][162].

In the UK, community-partnership approaches have been tested in the South Asian

community, utilising religious settings such as Mosques or Temples to increase uptake

of testing for CVH [121]. The support of religious leaders in delivering testing in these

venues seems to be important as testing was offered to 5000 SA people identified

through attendance at Mosque directly by research teams and not religious leaders, with

no uptake of testing [121, 163].

This effect with religious leader involvement has been seen in other faiths including the

Egyptian Coptic community and the Korean Christian community in North America,

resulting in higher levels of CVH testing than seen out with religious venues [164, 165].

In the UK, similar studies in the Chinese community have used established community

venues, churches and local wholesalers to advertise testing, with testing uptake in

around 230 individuals (around 15 individuals per session) [166]. Again, this illustrates

the problem with identifying how many people an advertising campaign reaches.

However, an American study providing an HBV educational program utilised

community based participatory research in churches to raise awareness and promote

testing for HBV [169]. This showed a positive effect with 93% of the intervention group

were tested, with only 2.9% in the control arm tested at 6 months follow up [169].

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5. Primary Care Recruitment

In all voluntary community-based approaches, self-selection bias is a common factor,

and it has been suggested that rates of infection may indeed be higher in those

individuals who do not take up such offers, due to co-morbid disease, or risk-activity

that makes them paradoxically reluctant to attend [121]. Additionally, for migrant

populations language and cultural factors may limit reach of whole population

advertisements. Whilst primary care testing in the UK is an alternative that may reach

out to these individuals, recent studies in West London have shown poor attendance

(10%) by members of migrant communities in specially prepared new-patient testing

sessions, despite an estimated local migrant prevalence of over 40% [160]. This low

uptake was also seen in East London where primary care databases were used to

identify migrants at risk of viral hepatitis. Identified patients were sent invitation letters

with information sheets in their native language and asked to attend for testing.

However, the trial was stopped early as only 2.3% took up this offer [181]. This mirrors

the recruitment challenges we saw in the primary care arm.

Given these difficulties, a range of different techniques have been utilised including

large scale recruitment drives of migrant groups in a study that tested almost five

thousand people for viral hepatitis at fifty-two different sites with oral fluid testing in

community venues. Some were approached in primary care waiting rooms whilst

attending for another reason as was the case in our study although they were directly

approached by the study team. However, the primary aim of this study was to determine

prevalence and as such interventions were not utilised [121]. Whilst this approach did

lead to some recruitment for their study, it was less successful than other community

venues used.

A more recent UK based study aimed to determine whether incentivising and

supporting primary-care physicians in areas with a high density of migrants increases

the numbers of adult migrants screened for viral hepatitis [182]. General practices were

randomly assigned to an opportunistic screening (control) group or to one of four

targeted screening (interventional) groups (standard or enhanced invitation letter based

either from standard (hospital) care or community-based care). In the control group,

general practitioners were given a teaching session on viral hepatitis and were asked to

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test all registered migrants. In the intervention, GPs were paid a nominal sum for setting

up searches of records, reimbursed for signed consent forms, and supported by a

dedicated clinician. The primary outcomes relating to testing included the proportion

of those eligible who were sent an invitation letter in the intervention groups, the uptake

of viral hepatitis screening (in the intention-to-treat population) within 31 days of being

sent the letter and the proportion of patients who tested positive for viral hepatitis. Most

of the primary care centres that were approached participated (63 of 70). In the eight

control general practices, screening was taken up by 1.7% of eligible participants. In

the 50 general practices that used the intervention, screening was taken up by 19.5% of

eligible participants (p=0·014) and the intervention was cost-effective. Testing uptake

was similar for enhanced versus standard letters (p=0.26). The investigators conclude

that screening migrants for viral hepatitis in primary care is effective if doctors are

incentivised and supported. However, they found community care expensive without

evidence that it offered additional value and there was no additional value of bespoke

invitation letters over standard letters. It would seem, therefore, that primary care

recruitment can be successfully done but that the method used must be carefully

considered to recruit successfully and to be financially viable.

In the USA there has been success in using an electronic health record prompt to

primary care physicians to test Asian American patients for HBV versus a control with

no prompt showed an increase in testing order in the intervention group (40.9% v 1.1%)

with uptake in testing in the intervention group of 30 of the 36 requested patients [174].

It is not currently known whether this effect would be seen in a UK population within

the NHS. There are systems in our primary care databases that could make such

prompts possible.

6. Linkage to Care

Linkage to care for positive CVH cases is poorly documented in most studies, with high

rates lost to follow-up. As noted above, the largest study of this nature, the BFreeNYC

study, around 57% of trial participants were kept in services until the end of the 4 year

study [158]. Whilst we did link all positive cases to care, there were small numbers.

This was time and resource intensive and may pose challenges at scale and out with the

clinical trial setting. A robust mechanism will have to be in place to ensure all positive

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cases have access to clinical care, advice and treatment.

7. Conclusion

In conclusion, chronic liver disease has been underestimated as a global public health

problem. There would appear to be a need for case-finding as it is a prevalent condition

that is silent in the early stages of disease. There is a need for effective global action

including education, prevention and early diagnosis for management and treatment to

prevent cirrhosis-related morbidity and mortality. Health literacy in liver disease

remains low, even in those who are known to have chronic liver disease [152]. This is

in line with our findings illustrating a lack of understanding on liver disease in general

as well as CVH specifically to include confusion amongst trial participants whether

they have had CVH or not.

At odds with much of the published literature, we found high levels of engagement in

a culturally and linguistically tailored educational program on CVH and subsequent

testing in a migrant population. To the best of my knowledge, this is the first time a

short, tailored film has been used to promote knowledge and testing of CVH in a BAME

population. Our study cohort addressed previous gaps where females were

underrepresented. However, in line with other studies primary care recruitment was

challenging and there remains a gap in the literature for how best to recruit in this

setting. We also confirm the low health literacy in liver disease in general and CVH

specifically. The role of LHW does have the potential to be further developed to

improve case finding in CVH in a cost-effective manner. The follow up rates in our

study were very high and whilst this is at odds with other literature it may be the small

numbers of cases allowed for an intensity of resource that may not be possible out with

the clinical trial setting or with a greater number of positive cases.

STRENGTHS AND LIMITATIONS OF THIS STUDY

Whilst recognising the feasibility nature of this study, I acknowledge a number of

limitations which provide useful lessons to consider for a future RCT to test the efficacy

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of the intervention and in recruiting first generation migrants (see Table 18). Firstly,

Primary Care recruitment was unexpectedly poor, and identification of the specific

reasons for this would improve this dataset further and facilitate planning of further

studies. A possible factor was that patients were informed of the educational event when

attending an appointment with their health care provider and so may have had other

health concerns at that time unrelated to this study. A more systematic method of

identifying our target population via primary care records search, for example would

allow us to reach more participants and potentially improve recruitment. The method

of recruitment from primary care will be reviewed prior to this work being extended,

particularly considering other recent studies reporting higher levels of testing in this

area [183].

Secondly, many of our participants were from older age groups (aged 61+), reflecting

much of the recruitment came from community centres frequented by retired people.

Film screenings were also held in the evenings and at weekends to try to balance this

effect, and whilst we did recruit smaller numbers across other age ranges, our

population remains skewed towards older participants and so our results may not be as

applicable across other age groups. It is conceivable that younger migrants may be less

religious and less likely to frequent religious venues [19-20]. Additionally, religious

venues we utilised were mainly Mosques and there was a gender bias towards males

being recruited here. Future work should widen recruitment to include religious venues

of other faiths and more females.

Thirdly, we were unable to establish a baseline for recruitment to assess how many

participants opted to attend the film screening upon exposure to the advertising

campaign. The nature of this study was to advertise to existing groups of people

utilising the recruitment venues; thus it was not possible to specifically assess those

individuals who may have heard of this work but decided not to attend the screening

event. This limitation has been noted in other studies of this type as described in the

literature review. In part, we believe this was related to the feasibility nature of this

work and we have plans to address this in scale-up to a multi-site randomised trial.

Additionally, we used finger-prick DBS testing as this was logistically easier in the out

of hospital setting and appropriate for this study. However, results of these tests were

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not available immediately and required further contact with the participants tested to

inform them of the results. A point-of-care test that could give immediate results could

lessen the time and logistical burden of this type of outreach work by removing the

need to re-contact all participants with the results, particularly given the nature of case-

finding work in CVH requires mass testing. This may also allow a one-stop treatment

clinic where fibroscan testing and on the day treatment could be possible. However,

careful consideration to maintaining confidentiality when given these results in the

community setting would be essential. A point of care result would also address the

issue where some people required a second confirmatory test and declined.

During the film screening events, it became clear the volume of paperwork was

burdensome. Additionally, there was some suspicion over the data we were gathering

and some reluctance to fill the questionnaires as they seemed lengthy and repetitive.

Some participants saw the knowledge domain as like an exam and were reluctant to fill

it out. Since this was a health education event for an underserved group, I did not

exclude anyone on the basis of reluctance to fill out paperwork. The only exception to

this was the consent for the DBS testing.

Despite these limitations, this study has significant findings that warrant further study

in a scaled-up randomised trial. Whilst there is some data on case-finding in higher-risk

minority groups these have mainly focussed on offering a single opportunistic testing

(such as those attending accident and emergency departments or utilising primary care

databases) of those already engaged with healthcare services [22]. This study utilised

the community itself to develop a novel educational intervention that provides

information to the community and the individuals within it on risk factors for CVH

acquisition as well as offering advice on how to obtain testing. This will help to address

the issue of reinfection and onwards transmission of CVH. A major issue in CVH

acquisition is vertical infection and so our success in recruiting female participants was

particularly important. Given the intervention we designed is culturally and

linguistically tailored to the South-Asian community we would hope that this film could

ultimately be widely available e.g. antenatal clinics in areas of high South-Asian

populations, if proven effective in a randomised trial to raise awareness of CVH and its

transmission. To the best of our knowledge there are no other studies examining the use

of a film to provide education as well as offering testing. This method, once fully

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evaluated with a randomised trial, should be particularly useful in the real-world with

the ready availability of technology such as social media and file sharing sites.

A particular success of our work was in recruiting female participants, and those from

a lower socio-economic status to both the focus groups and the film screening as well

as testing for CVH, as females have been under-represented in other work [11, 122].

Additionally, we were able to provide testing and so did not rely on self-reporting which

is a particular issue with other studies. There is no data on the accuracy of self-reporting

and furthermore, we saw confusion amongst participants as to whether they had been

tested for CVH and so self-report represents a potential source of bias.

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CHAPTER 12: CONCLUSIONS AND FUTURE WORK

189

These two linked studies successfully met their objectives and allowed us to gather

current ideas, knowledge and opinions on chronic viral hepatitis amongst South Asian

migrants through recruitment to a series of focus groups. These focus group discussions

also allowed identification of potential barriers to testing for CVH in the South Asian

community, and more generally any barriers and facilitators to accessing healthcare for

this population. Through analysis of the data gathered, five key themes emerged; lack

of knowledge on CVH, access to healthcare, testing for CVH, attitudes to health and

healthcare professionals and stigma (relating to ill health generally but not CVH

particularly). These themes were used to develop a structured message to produce a

culturally and linguistically tailored educational film on chronic viral hepatitis to be

shown in various community settings to promote testing for CVH. Additionally, a

questionnaire used both pre- and post-film was developed to aid the analysis of the

impact of the film. The SA community were willing to engage in community-based

activities and were receptive to our presence within the variety of community and

religious settings we visited. These studies did successfully address the NICE, NHS

England and WHO aim of offering testing, and indeed treatment, in areas familiar to

the migrant community.

The key metric of these studies was uptake of CVH testing after viewing a tailored

educational film. The uptake of testing (84%) far exceeded the criteria set as a marker

of success for this feasibility study at 40%. This is also far higher than is seen in other

studies aiming to test people for CVH, regardless of intervention type or nature of the

study. Despite this clear success, we noted some aspects that did not work as effectively

as intended. As such, there are lessons we have learned about elements of these studies

that could be refined in future work. Firstly, our recruitment revealed challenges with

the primary care arm and also in recruiting younger people. Primary care recruitment

was significantly more challenging than in the other venues. Plausible explanations for

this include the reliance on clinical staff opportunistically handing out the trial

information during consultations (the only recruitment not reliant on the research team).

It was not possible to track how many patients were approached. Additionally, it may

well be patients attending their surgery have other health concerns at the time that are

more pressing. Primary care could still be helpful in recruiting to studies, particularly

as the role of doctors being crucial in healthcare and access to service was highlighted

by the SA community throughout this work. It should be feasible to highlight studies

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opportunistically in primary care such as posters in waiting rooms and short adverts on

the TV that are usually in waiting rooms. This advertising would create awareness of

the relevant health condition but may create bias in the trial setting and may be better

used for real world roll out of interventions once their effectiveness has been shown in

trial settings. Relying on the clinician to take time out of a short consult to give

information did not work well. However, research team presence in the waiting room

to advertise the study and potentially recruit does not tackle the issue of patients having

other health concerns as a reason for attending which would take priority. Therefore,

consideration should be made to targeting recruitment using electronic health record

data to identify eligible participants. Additionally, a pathway finder to facilitate a link

between recruitment and primary care ideally from within the target community could

be effective and we noted the success of a similar approach in recruiting to our focus

groups.

A further issue was the recruitment of younger people. This could well be because

younger people were either working or busy with family commitments during the day

when we were recruiting. Additionally, the venues we targeted were more commonly

used by retired people e.g. social clubs. We recommend a considered approach to

community venues used in these type of study to include new types of place such as

youth clubs or venues such as parent and baby groups. Peer led recruitment may be

helpful here, as the members of the community we worked with were older. However,

we hypothesis the most successful strategy would be through utilisation of social media

platforms and smartphone apps and promotion of the trial in social networks. This

would be particularly useful in this community where we have seen the effect of word

of mouth spread of information. It would also allow advertising in the native language

of target communities where this is not English.

Another issue for consideration is the follow up of new diagnosed cases. In our study,

all patients were linked to care either in our own centre or locally to them. The small

numbers of patients involved made this possible. However, each case was time

intensive and if there is a large volume of positive cases a robust system should be

developed. We did, however, contact all patients with their results although this was

quicker with negative cases. We recommend PPI involvement at an early stage to

determine how this will be done. This can be more complicated where there is language

differences. Possible solutions to this would be the use of point of care testing with

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results available on the day. In the case of CVH, this could also incorporate other tests

such as Fibroscan. This would require strict confidentiality arrangements. If not

possible, exploration of digital media such as text messaging for patient apps for

negative tests (e.g. patient knows best) or utilisation of link personnel e.g. pathway

coordinators which may be more effective for elderly or non-English speakers.

A major issue identified was in completion of the questionnaire. This was intended to

provide data on key aspects of the film, particularly where uptake of testing was poor

to aid analysis of why this was the case. It was developed to assess for lack of self-

efficacy as a potential reason for not testing as well as assessing changes in knowledge

to ensure our key messages were delivered. Furthermore, determining who would be

important in delivering a message to get tested would be helpful if the film was not

effective in promoting testing. However, it is important to understand that there were

flaws with the questionnaire out with the low numbers not testing making the sample

too small to analyse. The questionnaires were too long, and some questions too complex

(multi-step questions). Additionally, it would have been simpler to take out some

questions for the post-film questionnaire from the pre-film version that were not

designed to change with the film but to assess characteristics of the individuals attitude

to their health. Overall, the concept was valid and simplification of the questionnaire

(both length and structure) as well as using digital methods such as key pads or tablets

to complete could be helpful, particularly where an intervention is less successful in

promoting testing.

The features of this work that contributed to its success were the engagement and

involvement of the SA population in all aspects, particularly notable the recruitment,

strategy (locations to recruit from and ideas on how to target the intervention to

maximum effect) and in developing the intervention itself. Providing education,

including more broadly on healthcare access as well as liver disease and CVH

specifically, with health literacy on CVH and liver disease itself lower than predicted.

However, identification of helped in generating key messages to be delivered by our

educational intervention. Given a particular issue was lack of awareness on

transmission, including this information in the film means that people can be made

aware of ongoing risks and take precautions were necessary and as such the film should

have benefits beyond pure case-finding. To address misconceptions on CVH we also

managed to impart more general information on liver disease. The film contained

192

information on accessing healthcare services and GP provision of free healthcare, it

was felt to be useful for those people new to the UK. Throughout both studies I saw the

importance of word of mouth spread of information for this community and so I feel

educational interventions will have potential benefits beyond that which can be

measured in a clinical trial setting. Female recruitment was a key target for this study,

and we were successful in this thus addressing a gap in the literature. This is particularly

important for some illness, like CVH, with vertical transmission. Additionally, by not

relying on existing healthcare databases e.g. primary care we could include those people

not already engaged with healthcare services.

Considerations for a scale up and future RCT in the UK will be driven by a robust

stakeholder committee to support roll-out. This strategy would include engagement

with key Public Health agencies, for example, Public Health England, the National

Screening Committee, Primary Care Networks and liver networks who would use this

film in their locality. Most importantly, the population itself will play an essential role

and engagement with them is necessary. This will require local hepatitis treatment

networks and secondary care sites being supported by community organisations and

faith leaders to set up screening and recruitment processes. Local Council Public Health

Teams, regional Public Health England teams and voluntary sector organisations will

need to be involved in discussions of how to deliver this sustainably.

Despite the limitations in our studies, the very high level of testing uptake leads us to

believe our work can provide a framework for researchers interested in case-finding

and indeed for targeted interventions generally. The main features are engaging with

the target community and developing the intervention in partnership with them by

determining existing knowledge of the relevant condition as well as determining the

barriers and facilitators to testing. This allows the intervention to be specific to the

condition and population being studied. We found further benefits in this partnership

with the community that built trust and engagement with our presence and undoubtedly

aided recruitment. This was noted with the word of mouth spread of information on our

study and the fact that people came forward to us as a result. This model would be of

particular benefit marginalised groups, where healthcare engagement can address some

of the barriers to healthcare more generally some communities face.

193

In the time between these studies finishing and the production of this thesis, we have

faced a global pandemic of covid-19 caused by infection with the Sars-Cov-2 virus. To

try to halt this pandemic, there has been recognition of risk factors for severe disease

and a recognition that BAME people are at a higher risk. The widespread reporting of

this in the mass media has really elevated public awareness of individual risk in

infective disease and in particular the link between ethnicity and risk. I believe some of

the lessons gained here would help in the development of interventions for BAME

communities relating to covid-19 and will further aid this work in promoting

recognition of BAME communities of the potential risk they may have in certain

illnesses.

In summary, we tested higher-risk first generation migrants (South Asian) for CVH,

detected positive cases and subsequently linking patients successfully to care. This

linkage to care is a fundamental factor in any intervention to improve testing rates for

CVH and we recommend robust plans are made for this in the design of any study of

this type. Equally, we believe it is important to test comprehensively for viral hepatitis

including previous Hepatitis B exposure, particularly as modern healthcare is

increasingly utilising therapeutic agents that carry a risk of HBV reactivation [23] and

we counselled our patients on this risk and informed their primary care physician.

We believe that the benefits of this study are three-fold. Firstly, in offering CVH testing

and thus potential diagnosis and treatment to a higher-risk group; secondly, providing

education to be shared more widely within the community and finally engagement of a

higher-risk group with community-based healthcare. Overall, we found a higher than

anticipated uptake of testing for CVH after viewing the educational film, however, the

feasibility nature of this study limits its ability to prove causation between the

intervention and subsequent testing.

The effectiveness of this study in promoting CVH testing has led to plans for an RCT

to further evaluate this intervention. If successful, this could be the basis of a model to

be utilised nationally and internationally in keeping with the emphasis on targeted case-

finding, in line with the WHO plan for global CVH elimination. More generally, we

194

have produced a model of how to generate a healthcare educational intervention that is

adaptable for other researchers to use for any health condition and population.

195

Publications Relating to the Thesis

1. Kelly, Pericleous, Ahmed, Vandrevala, Hendy, Shafi, Skene, Verma, Edge,

Nicholls, Gore, de Lusignan, Ala; Improving uptake of hepatitis B and hepatitis

C testing in South Asian migrants in community and faith settings using

educational interventions - a prospective descriptive study: International

Journal of Infectious Diseases doi: https://doi.org/10.1016/j.ijid.2020.08.059

2. Kelly, Pericleous, Hendy, de Lusignan, Ahmed, Vandrevala, Ala; Interventions

to Improve the Uptake of Screening Across a Range of Conditions in Ethnic

Minority Groups: A Systematic Review: Int J Clin Pract. 2018 Jun 19: e13202.

doi: 10.1111/ijcp.13202

3. Hendy, Vandrevala, Ahmed, Kelly, Gray, Ala; Feeling misidentified:

Understanding migrant's readiness to engage in health care screening. Social

Science & Medicine. 112481. 10.1016/j.socscimed.2019.112481.

4. Ahmed, Vandrevala, Hendy, Kelly, Ala; An examination of how to engage

migrants in the research process: building trust through an ‘insider’

perspective, Ethnicity & Health, 2019 DOI: 10.1080/13557858.2019.1685651

Conference Presentations:

1. Kelly, Pericleous, Ahmed, Hendy, Vandrevala, Mathew de Lusignan, Ala; A

Novel Educational Intervention for Chronic Viral Hepatitis (CVH) Case-

Finding in UK South-Asians, a High-Risk Population: Preliminary Results from

a National Institute for Health Research (NIHR) Feasibility Study AASLD The

Liver Meeting 2018

2. Kelly C, Pericleous M, Ahmed A, Hendy J, Vandrevala T, Mathew S, De

Lusignan S, Ala A; A novel educational intervention for chronic viral hepatitis

(CVH) case-finding in UK South Asians, a high-risk population: preliminary

results from a National Institute for Health Research (NIHR) feasibility study

BASL Annual scientific meeting 2018

3. Kelly C, Ahmed A, Pericleous M, Hendy J, Vandrevala T, Ala A; Factors

Preventing Testing for Chronic Viral Hepatitis (CVH) in UK South-Asians: A

Novel National Institute for Health Research (NIHR) Study in a High Risk

Group; AASLD Annual Meeting-The Liver Meeting 2017

4. Kelly C, Ahmed A, Pericleous M, Hendy J, Vandrevala T, de Lusignan S, Ala

A; Factors Preventing Testing for Chronic Viral Hepatitis (CVH) In UK South-

Asians - A Novel National Institute for Health Research (NIHR) Study to

Improve Recognition of CVH in a High Risk Population; BASL Annual

Meeting 2017

https://doi.org/10.1016/j.ijid.2020.08.059

196

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APPENDIX 1

FOCUS GROUP ADVERTISEMENT

212

APPENDIX 2: FOCUS GROUP DEMOGRAPHIC INFORMATION

213

214

APPENDIX 3: DEMOGRAPHIC INFORMATION FOR STUDY 2

Title of study: Intervention to Promote Testing for Viral Hepatitis in

People of South Asian Heritage

Thank you for your participation. Please answer the following questions. The information

you provide will only be used to help us better understand the views shared in this

questionnaire. It will be stored anonymously and will remain confidential.

1. Name:

_____________________________________________________________________

2. Your contact details:

Address

_____________________________________________________________________

_____________________________________________________________________

____________

Phone Email

____________________________________________________________________

3. Age in years

18-24 ☐ 25-40 ☐ 41-50 ☐

51-60 ☐ 61 and over ☐

4. Gender: ☐ Male ☐ Female

5. Length of Stay in UK (years/months):

____________________________________________

6. Where were you born? ☐Bangladesh ☐India ☐Pakistan

☐Sri Lanka

☐Other: __________________

215

7. Marital Status: ☐ Single ☐Married ☐Widowed ☐Divorced ☐ Co-

habiting

8. Education: ☐School level ☐College level ☐University Level

☐Professional

9. Which language (s) can you speak?

______________________________________________

10. Do you work? ☐ YES ☐

NO

If yes, what do you do?

_____________________________________________________________________

11. Religion:

____________________________________________________________________

12. Have you ever received vaccination for Hepatitis? ☐ YES ☐ NO ☐ DON’T

KNOW

13. Have you ever been tested for Viral Hepatitis B or C? ☐YES ☐NO ☐ DON’T

KNOW

14. If yes, have you ever been diagnosed

with Hepatitis B or C? ☐ YES ☐ NO ☐ DON’T

KNOW

15. If yes, have you received treatment for it? ☐ YES ☐ NO ☐ DON’T

KNOW

16. Have you had a blood transfusion before 1990? ☐ YES ☐ NO ☐ DON’T

KNOW

17. Have you shared injection needles for

medications or drugs before? ☐ YES ☐ NO ☐ DON’T KNOW

18. Have you been to Hajj? ☐ YES ☐ NO

19. If yes, did you have your head shaved? ☐ YES ☐ NO

Thank you

216

APPENDIX 4: QUESTIONNAIRE

Title of study: Intervention to Promote Testing for Viral Hepatitis in

People of South Asian Heritage

Please fill in this questionnaire as fully as possible, indicating your answer by marking the

box that best describes your opinion with an X. It should take around 10 minutes to complete.

Please ask one of the research team if you need any help.

Question Strongly

Agree

Agree Neither

Agree or

Disagree

Disagree Strongly

Disagree

I think it is important to do what I

can to protect myself from illness

even if I have a very busy life

Regular health checks are

important to avoid health problems

even if I feel well

I am resourceful so can usually find

solutions when I am faced with

unexpected problems or difficulties

It does not matter what I do, if I am

going to be ill it is meant to be

I prefer health care in my local

community rather than travel to a

hospital

It is my doctor’s role to tell me

what to do for my health

I feel able to approach my doctor to

ask for tests if I feel I need it

Hepatitis B and/or C can cause

severe health problems

It is likely someone like me could

have hepatitis B and/or C

Hepatitis B and/or C can be treated

I have been tested before for

hepatitis B &/or C

Hepatitis B and/or C always makes

you feel ill so if I had it I would

know something is wrong

Question Strongly Agree Neither Disagree Strongly

217

Agree Agree or

Disagree

Disagree

I am confident I know what

hepatitis B and C are

If I had hepatitis B and/or C I

would worry what people would

think

If I had hepatitis B and/or C I

would worry about being a burden

to my family

If I was tested for hepatitis B and/or

C I would be very worried about

the result

Hepatitis B and/or C can be

contracted through the following:

• Poor hygiene

• Contaminated food

• Contact with someone

else’s blood

• Touching someone (e.g.

shaking hands)

• Between partners

• Mother to baby

Hepatitis B and/or C affects some

communities more than others

If I was diagnosed with hepatitis B

or C I am confident I could live as

normal

If I was tested for hepatitis B and/or

C and did not have it I would not

need to take any further precautions

Testing for hepatitis B and/or C

would cause me problems or

difficulties

I did not have any problems filling

in this questionnaire

I found this film on hepatitis B and

C useful


C easy to understand


C relevant to me

Question Agree Disagree Neither Agree or

Disagree

I have experience of hepatitis B and/or C:

218

• Myself

• Someone important to

me (family or friends)

• I have heard of people

with it

• I do not have

experience of hepatitis

I would consider getting myself tested for hepatitis B and/or C if it was recommended by:

• My doctor

• My friends or family

• I heard about it

somewhere else (e.g.

TV, social media)

• Someone else

important to me

recommended it (e.g.

community leader)

• I would not consider

testing

I am planning to get tested for hepatitis B and/or C:

• Never

• Soon

• Within the next year

• At some point

Thank you for your time and participation in this study. Please leave any further comments

on this study, the film or the questionnaire in the box below:

219

APPENDIX 5: FULL RESULTS OF PRE AND POST FILM QUESTIONNAIRE

A breakdown of the replies to each question is detailed below (see Table 19 to Table 61). In

order to follow patterns of response more clearly, I have combined agree and strongly agree as

one reply in most questions, and the same for disagree and strongly disagree. Individual

questions can be combined into broad categories, or themes, reflecting attitudes of the

participants to health and health care; knowledge of chronic viral hepatitis; stigma;

transmission and infection with CVH; utility of the study intervention and processes;

experience of CVH; factors influencing testing and intention to test.

I. Attitudes to health and healthcare

The questions in this section were designed to help understand the general beliefs of

participants rather than having an expectation their answers to these questions would

necessarily change in response to the film.

Q1: I think it is important to do what I can to protect myself from illness even if I have a very

busy life

Of those who responded all people either agreed or strongly agreed that they should do what

they can to remain healthy, even when busy with life tasks. This was the same for those who

tested and those who did not. Relatively few did not respond to this question (<5% for both

groups) which could suggest a degree of certainty with the answer to this question.

Tested, n= (%) Non Tested, n= (%)

Invalid 3 (2.5) 1 (4)

Unchanged Pre- Post-Film Responses

Agree/Strongly Agree 115 (97.5) 24 (96)

Table 19: Change in pre and post film responses (Q1)

Q2: Regular health checks are important to avoid health problems even if I feel well

Again, there were few invalid responses (<5% each group). Of the valid responses, the vast

majority did not change their mind (98%: tested 97%; non-tested 100%) with most people in

both groups either agreeing or strongly agreeing (100% tested and 96% non-tested). Only small

220

numbers changed their response but this was only in the tested group. This is at odds with our

FG data about regular health checks when asymptomatic. It could be those who attended a

health education event were self-selected as those who make effort to safeguard their health.


Invalid 4 (3) 1 (4)

Unchanged Responses

Agree/Strongly Agree 111 (94) 23 (92)

Neutral 0 (0) 1 (4)

Changed Response Post Film

Agree/Strongly Agree to Neutral 1 (1) 0 (0)

Neutral to Agree/Strongly Agree 2 (2) 0 (0)


Q3: I am resourceful so can usually find solutions when faced with unexpected problems or

difficulties

There were more invalid responses here (14% and 8% in tested and non-tested groups

respectively). Of the valid responses, the majority did not change their mind (71%: tested 70%;

non-tested 78%) with most agreeing (80%: tested 79%; non-tested 83%). Of those who did

change their mind (29%: tested 30%; non-tested 22%), most changed to neutral (58%: tested

65%; non-tested 20%) but this was an influenced by an outlier for agree to neutral in the tested

cohort.

221

Tested, n= (%) Non Tested, n=

(%)

Invalid 16 (14) 2 (8)

Unchanged Responses


Neutral 6 (5) 2 (8)

Disagree/Strongly Disagree 9 (8) 1 (4)



Disagree/Strongly Disagree to Neutral 2 (2) 0 (0)


Neutral to Disagree/Strongly Disagree 4 (3) 2 (8)

Agree/Strongly Agree to Disagree/Strongly Disagree 1 (1) 0 (0)

Disagree/Strongly Disagree to Agree/Strongly Agree 4 (3) 0 (0)


Q4: It does not matter what I do, if I am going to be ill it is meant to be

The invalid number of responses was fairly high 14% in tested and 20% non-tested cohorts.

For those valid responses, most were unchanged (75%: tested 75%; non-tested 75%). Just over

half disagreed, (54%: tested 54%; non-tested 53%) but many also agreed (40%: tested 38%;

non-tested 47%). Of those who changed their mind, (25%: tested 25%; non-tested 25%) most

changed to neutral (either from agree or disagree) (57%: tested 56%; non-tested 60%). More

people did change to disagree (27%: tested 28%; non-tested 20%) than agree (17%: tested 16%;

non-tested 20%).

222


Invalid 17 (14) 5 (20)

Unchanged Responses


Neutral 6 (5) 0 (0)










Q5: I prefer health care in my local community rather than travel to a hospital

Invalid responses were low, 9% in the tested and 12% non-tested cohorts. Of the valid

responses, most did not change their answer (81%: tested 80%; non-tested 82%). For those

who did not change their response, the majority of respondents in both groups (60%) agreed

they preferred local community based healthcare.

For those who did change their response (18% tested cohort and 16% non-tested cohort) small

numbers changed reply across most domains (but <5% of respondents overall) but there was

no particular pattern for either cohort. It should be noted, this was a preference for local care

and not a refusal to travelling for healthcare.

223


Invalid 11 (9) 3 (12)

Unchanged Responses


Neutral 3 (3) 1 (4)










Q6: It is my doctor’s role to tell me what to do for my health

Invalid response rates were low, 8% in the tested and 12% non-tested cohorts. Of the valid

responses, most did not change their answer (76%: tested 77%; non-tested 73%) and mostly

agreed (90%: tested 89%; non-tested 73%). Those who changed their mind (24%: tested 23%;

non-tested 27%) mainly changed to disagree (52%: tested 52%; non-tested 50%), with few

changing to agree (16%: tested 12%; non-tested 33%). This is in keeping with results in study

1, where the FG participants emphasised the role of their doctor above themselves in health

decisions.


Invalid 9 (8) 3 (12)

Unchanged Responses


Neutral 2 (2) 0 (0)






224





Q7: I feel able to approach my doctor to ask for tests if I feel I need it

Invalid responses were again low (8% tested and 8% non-tested) the majority of respondents

not changing their answer (93%: tested 93%; non-tested 97%) from agreeing (99%: tested 99%;

non-tested 100%). Those who changed their mind (7%: tested 7%; non-tested 4%), were

almost all in the tested cohort, except one person. Half of those tested who changed their mind

changed to agree. This suggests the study cohort was comfortable with self-efficacy when

approaching medical services which is perhaps not universal in the wider population.

Tested, n=

(%)

Non Tested, n= (%)

Invalid 9 (8) 2 (8)

Unchanged Responses


Neutral 0 (0) 0 (0)










225

I. Knowledge of CVH

Q8: Hepatitis B and/or C can cause severe health problems

Invalid response rates were low (8% tested and 8% non-tested). Of the valid responses, most

did not change their answer (88%: tested 89%; non-tested 83%) with most agreeing, (99%:

tested 99%; non-tested 100%). Those who changed their mind (12%: tested 11%; non-tested

17%) mainly changed to agree (69%: tested 75%; non-tested 50%). Half of those not tested

who changed their mind changed to agree. This was a key message of the film (alongside

reassurance of treatment being possible) but does not sit with the gaps in knowledge we found.


Invalid 10 (8) 2 (8)

Unchanged Responses


Neutral 1 (1) 0 (0)










Q9: It is likely someone like me could have hepatitis B and/or C

Invalid response rates were higher in this question perhaps reflecting a degree of uncertainty

(15% tested and 16% non-tested cohorts). Of the valid responses, most did not change their

answer (65%: tested 70%; non-tested 43%) with most agreeing (95%: tested 96%; non-tested

88%). Those who changed their mind (35%: tested 30%; non-tested 57%) mainly changed to

agree (57%: tested 57%; non-tested 58%). Perhaps the risk in SA people highlighted in the film

came across clearly.

226


Invalid 18 (15) 4 (16)

Unchanged Responses


Neutral 3 (3) 1 (4)










Q10: Hepatitis B and/or C can be treated

There was more uncertainty in this question, with higher still rates of invalid response (24%

tested and 20% non-tested cohorts). Of the valid responses, most did not change their answer

(80%: tested 81%; non-tested 75%) and most agreed, (98%: tested 97%; non-tested 100%).

Those who changed their mind (20%: tested 19%; non-tested 20%) mainly changed to agree

(86%: tested 88%; non-tested 80%). Again, this may reflect the messaging in the film

emphasising treatment is possible.


Invalid 28 (24) 5 (20)

Unchanged Responses


Neutral 2 (2) 0 (0)







227




Q11: I have been tested before for hepatitis B &/or C

Invalid responses were again high (21% tested and 28% non-tested). This could reflect

concerns about confidentiality as well as uncertainty with knowledge. Of the valid responses,

most did not change their answer (64%: tested 60%; non-tested 83%) and whilst almost half

disagreed (49%: tested 48%; non-tested 53%) many also agreed (25%: tested 25%; non-tested

27%) with similar proportions neutral (25%: tested 27%; non-tested 20%). Those who changed

their mind (36%: tested 40%; non-tested 17%) mainly changed to disagree (50%: tested 51%;

non-tested 33%). In those who tested and who changed their mind, a change to disagree they

have been tested before was seen in 51%. Perhaps post film they better understood what CVH

was. However, this cannot be compared with the non-tested cohort as very small numbers

changed their mind, limiting interpretation.


Invalid 25 (21) 7 (28)

Unchanged Responses


Neutral 15 (13) 3 (12)










228

Q12: Hepatitis B and/or C always makes you feel ill so if I had it I would know something is

wrong

This question again saw invalid responses (13% in the tested and 16% non-tested cohorts). Of

valid responses 59% did not change their mind. Of these, 81% agreed or strongly agreed with

this. Of those who changed their mind after viewing the film, there was a spread of responses.

Of the whole cohort, most changes were neutral to disagree 28% (27.5% tested and 30% non-

tested). 20% from agree to neutral (tested 22.5% and non-tested 10%). Overall, the change to

disagree (from agree or neutral) was 44% (tested 42.5% non-tested 50%). This could mean the

potential silent nature of CVH was realised after viewing the film. This could not be universal

though as the changed to agree that CVH was described in 34% (tested 35% and non-tested

30%).


Invalid 16 (13) 4 (16)

Unchanged Responses


Neutral 6 (5) 2 (8)










Q13: I am confident I know what hepatitis B and C are

Invalid responses for both tested and non-tested were similar 15 and 16% respectively. Of the

valid responses, (n=121) 41% did not change their mind though this seemed less likely in the

non-tested group 23% versus tested 45%. All those non-tested participants who did not change

their mind agreed, whereas there was more range in the tested group.

229

Most people who changed their mind did so to agree after the film, of the whole cohort who

changed their mind this was 77% (tested 76% and non-tested 81%).


Invalid 18 (15) 4 (16)

Unchanged Responses


Neutral 10 (8) 0 (0)










II. Stigma

Q14: If I had hepatitis B and/or C I would worry what people would think

Of the valid responses, n=115, 62% did not change their mind however there was a spread of

answers. Of those valid responses 42% agreed (tested 44% non-tested 36%) they would be

worried what people would think of them if they had CVH whilst 45% disagreed (tested 44%,

non-tested 43%). Most people who changed their mind changed from agree to neutral (39%)

which was 41% tested and 29% non-tested. This may mean we successfully targeted concerns

of stigma.


Invalid 24 (20) 4 (16)

Unchanged Responses


Neutral 7 (6) 3 (12)



230








Q15: If I had hepatitis B and/or C I would worry about being a burden to my family

The invalid responses were in line with other questions. Of the valid responses, n=121, most

63% (65% tested and 54% non-tested) agreed. Only a minority 27% disagreed (26% tested and

31% not tested) disagreed with this sentiment of being a burden to family. This is in agreement

with the results of study one that related to ill heath in general rather than CVH specifically.

Of those who changed their mind, most (55%) were to disagree 53% tested and 62% non-

tested.


Invalid 18 (15) 4 (16)

Unchanged Responses


Neutral 6 (5) 2 (8)










231

III. Transmission and infection with CVH

Q16: If I was tested for hepatitis B and/or C I would be very worried about the result

Invalid numbers of responses were fairly standard. Of the valid responses most were worried,

and the majority (68%) were unchanged after viewing the film (65% tested and 85% not tested).

Of those who didn’t change their mind, the majority (73%) agreed (73% tested and 71% non-

tested) with only 17% disagreeing (18% tested and 12% non-tested). Of those who changed

their mind, n=39, most (49%) changed to disagree (47% tested and 66% non-tested) and whilst

this looks like a difference between the tested and non-tested cohorts, the not tested numbers

were very small. More people in the tested cohort changed their mind from agree to neutral

(26%) whereas no one in non-tested did. No one who didn’t test changed to agree but the small

numbers limit conclusions.


Invalid 16 (14) 5 (20)

Unchanged Responses


Neutral 6 (5) 3 (12)










Q17: Hepatitis B and/or C can be contracted through the following:

(a) Poor hygiene

This question saw more invalid responses, especially among the tested group (one third were

invalid). Of the valid responses, n=99, 74% were unchanged by the film (78% tested 55% not

232

tested) with most people agreeing (97%). Non-tested people were more likely to change their

mind 45% compared to tested 22% (overall 26%). Most people who changed their mind

changed to agree (77%). It is not clear whether this message did not transmit well or whether

contaminated blood/products were considered poor hygiene.


Invalid 39 (33) 5 (20)

Unchanged Responses


Neutral 1 (1) 0 (0)









Table 35: Change in pre and post film responses (Q17a)

(b) Contaminated food

Overall there was a higher number of invalid responses, especially in the tested group. Of the

valid responses, those unchanged were 76% (tested 79%; non-tested 63%). Almost all (99%)

agreed. Most people who changed their mind, changed it to agree (63%) but 86% of the non-

tested cohort who changed their mind and 53% of those who tested. Perhaps this

misunderstanding made them confident they didn’t have CVH.


(%)

Invalid 38 (32) 6 (24)

Unchanged Responses


Neutral 1 (1) 0 (0)

233









Table 36: Change in pre and post film responses (Q17b)

(c) Contact with someone else’s blood

This question saw fewer invalid responses compared with other questions in this category.

Of the valid responses, 74% were unchanged all of whom agreed. Of those who changed

their mind, most (60%) changed to agree 60% (55% who tested and 75% who did not).

This could mean those who did not test felt less at risk as they did not feel they have had

this contact.


(%)

Invalid 22 (19) 4 (16)

Unchanged Responses


Neutral 0 (0) 0 (0)









Table 37: Change in pre and post film responses (Q17c)

234

(d) Touching someone (e.g. shaking hands)

Invalid responses high, again more so in tested group. Of the valid responses 58% did not

change their mind (tested 51%; non tested 60%) with 23% agreeing (tested 27%; non tested

8%). Most, 63%, disagreed (59% tested; 75% non-tested). Most who changed their mind

changed to disagree (84%) with 84% in the tested group and 87% non-tested.


Invalid 31 (26) 5 (20)

Unchanged Responses


Neutral 6 (5) 2 (8)









Table 38: Change in pre and post film responses (Q17d)

(e) Between partners

Around one third of responses to this question were invalid. Of the valid responses 65% did

not change their mind (tested 68% non-tested 47%), most of whom agreed (85%). Most of

those who changed their mind, changed to agree (72%) tested 70%; non tested 78%.


Invalid 33 (28) 8 (32)

Unchanged Responses


Neutral 5 (4) 0 (0)




235






Table 39: Change in pre and post film responses (Q17e)

(f) Mother to baby

Of the valid responses, 55% did not change their mind after viewing the film (57% in the tested

group and 50% in non-tested). In this group, most agreed (84%) which was a seemingly higher

proportion for tested (85%) than non-tested (78%). Of those who changed their mind, most

changed to agree (73%; 75% tested; 67% non-tested).


Invalid 35 (30) 7 (28)

Unchanged Responses


Neutral 6 (5) 2 (8)









Table 40: Change in pre and post film responses (Q17f)

Q18: Hepatitis B and/or C affects some communities more than others

Of the valid responses, 61% were unchanged (tested cohort 76%, non-tested 65%). Most of

whom agreed (82%) tested 83%; non-tested 77%. Those who changed their mind changed to

agree (87%) for tested 88% and 86% non-tested.

236


Invalid 38 (32) 5 (20)

Unchanged Responses


Neutral 6 (5) 1 (4)










Q19: If I was diagnosed with hepatitis B or C I am confident I could live as normal

Of valid responses, 59% were unchanged (61% tested; 48% non-tested) most of whom agreed

(79%; 77% tested and 90% non-tested). Of those who changed their mind, most (74%) changed

to agree (69% tested and 90% non-tested).


Invalid 25 (21) 4 (16)

Unchanged Responses


Neutral 9 (8) 1 (4)










237

Q20: If I was tested for CVH and didn’t have it I wouldn’t need to take further precautions

Of the valid responses, more than half (58%) were unchanged across the whole cohort (tested

60%; non-tested 52%). Almost half agreed that a single negative test for CVH meant no further

precautions were required (48% tested; 55% non-tested). However, a similar proportion (46%)

disagreed further precautions were not required after a single negative test (46% tested; 45%

non-tested).

Of those who changed their mind (48% in the non-tested cohort and 40% of those tested), half

changed to disagree (47% in the tested and 60% non-tested cohorts). This message may need

to be strengthened.


Invalid 24 (20) 4 (16)

Unchanged Responses


Neutral 3 (2) 0 (0)










Q21: Testing for hepatitis B and/or C would cause me problems or difficulties

Of the valid responses, 57% were unchanged (60% tested, 43% non-tested) with most 67%

disagreeing (69% tested; 56% non-tested). Whilst there was a range of changes of mind, most

changed to disagree 56%, tested 60%; non-tested 42%.


(%)

Invalid 22 (19) 4 (16)

Unchanged Responses


238

Neutral 7 (6) 3 (12)










IV. Study intervention and processes

Q22: I did not have any problems filling in this questionnaire

There was a greater proportion of invalid responses in those testing. Of the valid responses,

64% did not changed their mind (57% tested; 90% non-tested) with 92% of these agreeing. Of

those who changed their mind the majority (59%) changed to agree 56% in tested and all (n=2)

in non-tested. It is unclear whether the invalid responses represented problems filling the

questionnaire that participants were reluctant to mention or perhaps that they didn’t know the

answer especially with the knowledge based questions.


(%)

Invalid 44 (37) 5 (20)

Unchanged Responses


Neutral 1 (1) 0 (0)










239

Q23: I found this film on hepatitis B and C useful

There were fewer invalid responses. Only a single participant disagreed and tested. All

responses strongly agreed.


Invalid 15 (13) 3 (12)

Strongly Agree 62 (53) 10 (40)

Agree 40 (34) 12 (48)

Disagree 1 (1) 0 (0)

Table 46: Opinion on the usefulness of the educational film (Q23)

Q24: I found this film on hepatitis B and C easy to understand

Only small numbers invalid. All non-tested agreed or strongly agreed, 96% of the tested cohort

agreed.


Invalid 8 (7) 3 (12)


Agree 50 (42) 13 (52)

Neutral 4 (3) 0 (0)

Table 47: Ease of understanding of the intervention (Q24)

Q25: I found this film on hepatitis B and C relevant to me

Few invalid responses were seen to this question. Most people agreed or strongly agreed (77%)

which was similar for both cohorts.


Invalid 8 (7) 3 (12)


Agree 46 (39) 12 (48)

Neutral 15 (13) 5 (20)

Disagree 10 (8) 1 (4)

Table 48: Relevance of film (Q25)

240

V. Experience of CVH

Q26: I have experience of hepatitis B and/or C:

(a) Myself

There were many invalid responses, 57% of the tested cohort had invalid responses and 24%

of non-tested. Of valid responses, 60% were unchanged (57% tested; 68% non-tested) and most

(74%) were disagreeing (69% tested; 85% non-tested). In the tested cohort 14% agreed, 8% in

non-tested. Of those who changed their mind, most changed to disagree 46% (55% in the tested

cohort, with only one patient (17%) in the non-tested cohort.


Invalid 67 (57) 6 (24)

Unchanged Responses


Neutral 5 (4) 1 (4)










(b) Someone important to me (family or friends)

Many more invalid responses occurred in the tested cohort (almost half) compared with one

quarter in non-tested group. Of the valid responses, most (72%) did not change their mind pre

and post film (73% tested; 68% non-tested) with a majority agreeing (53%: tested 62%; non-

tested 23%). For those who changed their mind, it was more likely in the non-tested than

tested cohort. The commonest change was from disagree to neutral (44% overall, tested 35%;

non-tested 66%). In the tested cohort, people were almost as likely to change their mind in

241

the opposite direction from neutral to disagree (29%) whereas none in the non-tested changed

in this way.


Invalid 56 (47) 6 (24)

Unchanged Responses


Neutral 6 (5) 1 (4)










(c) I have heard of people with it

Of the valid responses, most (72%: tested 70%; non-tested 79%) did not change their mind

and mainly agreed (74%: tested 57%; non-tested 53%). Other responses, in both tested and

non-tested cohorts were split between neutral and disagree. A small proportion (28%)

changed their mind (30% tested; 21% non-tested). Most people changed their mind to agree

(68%: 55% tested; 75% non-tested).


Invalid 58 (49) 6 (24)

Unchanged Responses


Neutral 4 (3) 3 (12)






242





(d) I do not have experience of hepatitis

Again half of the tested and one quarter of non-tested showed invalid responses. Of those with

valid responses, most did not change their mind (61%: 65% tested; 47% non-tested). Responses

were split with agree (57%: 54% tested; 67% non-tested) and disagree (35%: 35% tested; 33%

non-tested). Of those who changed their mind, the commonest change was from agree to

disagree (37%: 35% tested; 40% non-tested) but also from disagree to agree (20%: 15% tested;

30% non-tested) was also seen, as was a change to neutral (30%: 30% tested; 30% non-tested).


(%)

Invalid 61 (52) 6 (24)

Unchanged Responses


Neutral 4 (3) 0 (0)










VI. Testing influences and intention

Q27: I would consider getting myself tested for hepatitis B and/or C if it was recommended by:

(a) My doctor

243

Whilst acknowledging the invalid responses, there was a result when looking at valid responses

where 96% did not change their mind and all of whom agreed with the statement. Very few

participants changed their mind.


Invalid 43 (36) 5 (20)

Unchanged Responses






(b) Friends or family

High number of invalid responses of over half of the testing cohort (55%) and almost half of

the non-tested cohort (48%). Of the valid responses, 71% did not change their mind (72%

tested; 69% non-tested) and most agreed (85%: 89% tested; 67% non-tested). Of those who

did change their mind, it was mostly from disagree to agree (42%: 47% tested; 25% non-tested).


Invalid 65 (55) 12 (48)

Unchanged Responses


Neutral 1 (1) 2 (8)










244

(c) I heard about it somewhere else (e.g. TV, social media)

High number of invalid responses, 53% in tested and 48% non-tested. It is possible people did

not answer the question if they did not agree with the statement and the structure of these

questions has to be reviewed. Of the valid responses, 67% overall were unchanged (tested

70%; non-tested 54%) with most overall agreeing (72%: tested 74%; non-tested 57%). Of the

changed responses (33%: tested 30%; non-tested 46%) the replies were very variable, with

most changing to agree (48%: tested 53%; non-tested 33%) but the number changing to

disagree (35%: tested 35%; non-tested 33%) was broadly similar.


Invalid 62 (53) 12 (48)

Unchanged Responses


Neutral 1 (1) 2 (8)










(d) Someone else important to me recommended it (e.g. community leader)

Invalid responses very similar to the other parts of this question (54% tested and 48% non-

tested). Of the valid responses, 57% did not change their response (tested 57%; non-tested

54%) and most of these agreed (76%: tested 84%; non-tested 43%). This did seem to be more

likely in the tested than non-tested cohort. Of those who changed their mind (43%: tested 43%;

non-tested 46%), most changed to agree (59% tested 65%; non-tested 33%) but this was

heavily skewed in the testing cohort changing from disagree to agree (48%: tested 57%; non-

tested 17%). In the non-tested cohort, half of those who changed their mind changed from

disagree to neutral (9% tested cohort).

245


(%)

Invalid 64 (54) 12 (48)

Unchanged Responses


Neutral 1 (1) 3 (12)










(e) I would not consider testing

Again very high invalid responses with 64% testing and 40% non-testing cohorts. Of the valid

responses, 62% (tested 60%; non-tested 67%), most disagreed (86%: tested 88%; non-tested

80%). None of the non-tested cohort agreed and remained unchanged after the film. Of those

who changed their mind 38% overall; tested 40%; non-tested 33% most changed to disagree

(73%: tested 76%; non-tested 60%).


(%)

Invalid 75 (64) 10 (40)

Unchanged Responses


Neutral 1 (1) 2 (8)





246





Table 57: Change in pre and post film responses (Q27e)

Q28: I am planning to get tested for hepatitis B and/or C:

(a) Never

High rates of invalid responses again for testing (71%) more than non-testing (48%). Of the

valid responses 68% (tested 68%; non-tested 69%) did not change their mind and most

disagreed (78%: tested 74%; non-tested 89%). Of those who changed their mind (32%: tested

32%; non-tested 31%) most changed from to disagree (67%: tested 73%; non-tested 50%).


(%)

Invalid 84 (71) 12 (48)

Unchanged Responses


Neutral 2 (2) 0 (0)










(b) Soon

Invalid rates of response were similar in both cohorts with 53% tested and 48% non-tested

participants not completing the question. Of the valid responses, the answer was unchanged in

75% (tested 80%; non-tested 54%) and mostly (88%) agreeing to testing soon (tested 93%;

247

non-tested 57%). Of those who changed their mind, most changed to agree (59%: tested 55%;

non-tested 67%).


(%)

Invalid 63 (53) 12 (48)

Unchanged Responses


Neutral 1 (1) 1 (4)










(c) Within the next year

There were many more invalid responses in the tested cohort (70%) than tested non-tested

(52%). Of the valid tests, those whose replies were unchanged (45%: tested 49%; non-tested

33%) there was a spread of answers with the most common overall disagree (48%: tested 47%;

non-tested 50%) with neutral (24%: tested 17%; non-tested 50%) and agree (29%: tested 35%;

non-tested 0%) similar but no non-tested agreed. Of those who changed their mind, most

changed to agree (46%: tested 39%; non-tested 62%). I believe there were issues understanding

this question and this making interpretation of the results challenging.


(%)

Invalid 83 (70) 13 (52)

Unchanged Responses


Neutral 3 (2) 2 (8)


248









(d) At some point

Of the valid responses, those that were unchanged (56%: tested 55%; non-tested 60%) were in

the majority. Most participants agreed they would be tested at some point (76%: tested 75%;

non-tested 78%). Of those who changed their reply, (44%: tested 45%; non-tested 40%) most

changed from agree to disagree in the tested cohort (40%) whereas the majority of non-tested

respondents who changed their mind changed to agree 83%.


(%)

Invalid 74 (63) 10 (40)

Unchanged Responses


Neutral 2 (2) 2 (8)










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