Deliverable 2.5 Revision: 1.0 Authors: Dr Verina Waights (OU) Project co-funded by the European Commission within the ICT Policy Support Programme Dissemination Level P Public C Confidential, only for members of the consortium and the Commission Services Baseline Survey: Pilot Phase 2 Project Acronym: DISCOVER Grant Agreement Number: 297268 Project Title: Digital Inclusion Skills for Carers bringing Opportunities Value and Excellence
61
Embed
Baseline Survey : Pilot Phase 2s3-eu-west-1.amazonaws.com/...D2.5-Baseline-Survey-Pilot-Phase-2-final.pdf · Baseline Survey : Pilot Phase 2 Project Acronym: DISCOVER Grant Agreement
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
Deliverable 2.5 Revision: 1.0
Authors:
Dr Verina Waights (OU)
Project co-funded by the European Commission within the ICT Policy Support Programme
Dissemination Level
P Public ����
C Confidential, only for members of the consortium and the Commission Services
Baseline Survey: Pilot Phase 2
Project Acronym: DISCOVER
Grant Agreement Number: 297268
Project Title: Digital Inclusion Skills for Carers bringing
Opportunities Value and Excellence
Page 2 of 61
REVISION HISTORY AND STATEMENT OF ORIGINALITY
Revision History
Revision Date Organisation Description
1.0 November 2014 OU Draft in progress and pilot site contributions requested
1.1 March 6th 2015 OU first full draft
1.2 March 10th 2015 BIRM review
1.3 March 11th 2015 OU Final review
Statement of originality:
This deliverable contains original unpublished work except where clearly
indicated otherwise. Acknowledgement of previously published material and of
the work of others has been made through appropriate citation, quotation or
both.
Page 3 of 61
Contents
REVISION HISTORY AND STATEMENT OF ORIGINALITY ...................................................................................... 2
TABLE OF FIGURES ............................................................................................................................................. 5
TABLE OF TABLES ............................................................................................................................................... 5
2.2.1. Greece (AUTH) ................................................................................................................................... 8 2.2.2. Spain (INTRAS) .................................................................................................................................. 8 2.2.3. The Netherlands (ASTRA) .................................................................................................................. 9 2.2.4. The UK (OU)....................................................................................................................................... 9
3. PILOT PROFILES ...................................................................................................................................... 10
3.1. GREECE................................................................................................................................................... 10 3.2. SPAIN ..................................................................................................................................................... 10 3.3. THE NETHERLANDS ................................................................................................................................... 12 3.4. THE UK .................................................................................................................................................. 14
5.1. LEARNING FROM RECRUITMENT DURING PILOT PHASE 1 .................................................................................. 15 5.2. RECOMMENDATIONS ARISING FROM PILOT PHASE 1 ........................................................................................ 17 5.3. RECRUITMENT DURING PILOT PHASE 2 .......................................................................................................... 17
5.3.1. Greece ............................................................................................................................................. 18 5.3.2. Spain................................................................................................................................................ 19 5.3.3. The Netherlands .............................................................................................................................. 20 5.3.4. UK .................................................................................................................................................... 20
6. USER METHODOLOGY ............................................................................................................................ 22
7.1. EVALUATION OF THE INITIAL QUESTIONNAIRE DURING PILOT PHASE 1 ................................................................. 25 7.1.1. Recommendations for Pilot Phase 2 ............................................................................................... 25
7.2. PILOT PHASE 2 ......................................................................................................................................... 25
8. FINDINGS FROM PILOT PHASE 2 ............................................................................................................. 26
8.2. LENGTH OF TIME AS A CARER ....................................................................................................................... 29 8.3. LEARNING DIGITAL SKILLS ........................................................................................................................... 29 8.4. ATTITUDES TOWARDS COMPUTERS ............................................................................................................... 30 8.5. TOPICS OF INTEREST TO CARERS ................................................................................................................... 31 8.6. QUALITY OF LIFE OF CARERS ........................................................................................................................ 32 8.7. HEALTH .................................................................................................................................................. 32 8.8. WELL-BEING ............................................................................................................................................ 32
Page 4 of 61
8.9. LONELINESS AND ISOLATION ........................................................................................................................ 34 8.10. GENDER .................................................................................................................................................. 35 8.11. COUNTRY ................................................................................................................................................ 37 8.12. AGE ....................................................................................................................................................... 43
9.1. RECRUITMENT .......................................................................................................................................... 43 9.2. BASE LINE SURVEY .................................................................................................................................... 44
9.2.1. Demographics ................................................................................................................................. 44 9.2.2. Health .............................................................................................................................................. 44 9.2.3. Wellbeing ........................................................................................................................................ 45 9.2.4. Loneliness and isolation .................................................................................................................. 45 9.2.5. Learning digital skills ....................................................................................................................... 45 9.2.6. Topics of interest to carers .............................................................................................................. 46 9.2.7. Attitudes to computers ................................................................................................................... 46 9.2.8. Gender ............................................................................................................................................. 47 9.2.9. Country ............................................................................................................................................ 47
APPENDIX 1 BIRMINGHAM CITY COUNCIL ETHICS APPROVAL ........................................................................................... 49 APPENDIX 2 OPEN UNIVERSITY ETHICS APPROVAL ......................................................................................................... 50 APPENDIX 3 UNIVERSITY OF THESSALONIKI ETHICS APPROVAL .......................................................................................... 51 APPENDIX 4 INTRAS ETHICS APPROVAL ...................................................................................................................... 52 APPENDIX 5 PARTICIPANT INFORMATION SHEET ............................................................................................................ 53 APPENDIX 6 USER ENGAGEMENT IN ITERATIVE DESIGN: THE NETHERLANDS ........................................................................ 58 APPENDIX 7 INVITATION LETTER FOR CARERS ................................................................................................................ 60 APPENDIX 8 PROGRAMME OVERVIEW FOR INTRODUCTORY WORKSHOP ............................................................................ 61
Page 5 of 61
Table of Figures
Figure 1: A carer trying out DISCOVER on a tablet and a smart phone ................................ 22
Figure 2: Unique coding for each participant ........................................................................ 23
Figure 3: Excel spreadsheet for monitoring data collection ................................................... 23
Figure 4: Carers and DISCOVER partners exploring the DISCOVER skills Zone ................. 24
Figure 5: Length of time participants have been in a caring role ........................................... 29
Figure 6: Frequency of contact with non-resident family and friends ..................................... 35
Figure 7: Levels of employment of male and female informal carers .................................... 36
Figure 8: Informal carers social networking skills by gender ................................................. 37
Figure 9: Gender of informal carers by country ..................................................................... 38
Figure 10: Age of informal carers by country ......................................................................... 38
Figure 11: Levels of education of informal carers by country ................................................ 39
Figure 12: Informal carers’ levels of employment by country ................................................. 39
Figure 13: Informal carers’ ownership of computers/mobile phones and methods of accessing the internet ..................................................................................................................... 40
Figure 14: Attitudes to computers by country ........................................................................ 40
Figure 15: Informal carers’ use of computers by country ...................................................... 41
Figure 16: Informal carers’ use and desired use of computers by country ............................. 42
Figure 17: Informal carers’ attitudes to society by country ..................................................... 43
Table of Tables
Table 1: Number of Participants (carers and cared for people) recruited to date for Pilot Phase 2 [by country] ...................................................................................................... 18
Table 2: Demographics of informal carers in Pilot Phase 2 ................................................... 26
Table 3: Percentage of informal carers per country: according to their relationship with the care recipients ............................................................................................................... 27
Table 4: Demographics of formal carers in Pilot Phase 2 ...................................................... 28
Table 5: Attitudes towards computers ................................................................................... 31
Table 6: Interest in learning................................................................................................... 32
Table 7: Feelings of Well-being ............................................................................................. 33
Table 8: Feelings about society ............................................................................................ 33
Table 9: Feelings about work-life balance ............................................................................. 34
Page 6 of 61
Executive Summary
Pilot Phase 2 was carried out in 4 pilot sites: Greece, Spain, the Netherlands and the UK. Prior
to this, a pre-pilot phase and Pilot Phase 1 had been completed. During the pre-pilot phase,
focus groups were held in each pilot site: initially to ascertain the needs of carers, and then to
iteratively test the four developing Skills Zones to ensure accessibility and appropriateness.
During Pilot Phase 1, each pilot site recruited 25 - 30 formal and informal carers and a
number of stakeholders to trial the Skills Zone and the impact evaluation tools. Building on
the findings from the initial focus groups, a base line survey was conducted in Greece, Spain
and the UK to explore the impact of caring on carers’ health and well-being, establish their
levels of digital, caring and employability skills, and to determine their interest in developing
these skills further. Carers in the Netherlands were reluctant to participate in the survey.
The Pilot Phase 1 base line survey revealed that informal carers were often caring for more
than one person and many were not in paid employment. The majority of formal and
informal carers did not feel left out of society but nearly 20 percent felt their role was
undervalued. Carers were interested to gain and improve their digital skills but were
primarily interested in learning about health conditions and improving their caring skills.
This report focuses on the findings from the base line survey carried out during Pilot Phase 2.
347 carers and cared for people were recruited across the four pilot sites. The survey
revealed that carers spanned a range of ages, years in a caring role, and caring situations.
Most of the informal and formal carers were female, caring for people over 70 years old.
Many informal carers were caring for one or both parents and a high proportion were caring
for spouses or partners. Many carers were also looking after children, siblings and
grandparents, and some were also looking after neighbours and friends.
Informal carers tend to experience poorer quality of life than formal carers and ill health is
more likely to impact on their daily living. Generally, formal carers have a greater sense of
wellbeing than informal carers, although some formal as well as informal carers felt
undervalued and left out of society.
Many carers had internet access but generally their use of the internet was quite limited.
Carers were interested in getting started with technologies, improving their knowledge of
health conditions and their caring and employability skills. Both formal and informal carers
were particularly interested in contacting other carers online.
Country related differences regarding informal carers are complex: the age profiles and
carer’s levels of employment differed across the four countries. However, carers across the
four countries were equally likely to own a PC, although they differed in their methods of
accessing the internet and the range of activities they engaged in. Informal carers generally
across the four countries had similar perceptions of well-being but there were significant
differences in their attitudes towards both computers and society.
The findings from this baseline survey have informed WP3 Content Creation and WP4 Pilot
Deployment during Pilot Phase 2 and will inform WP5 Exploitation and Commercialisation.
Page 7 of 61
1. Introduction
This report presents the findings of the base line survey carried out across the four pilot sites
during Pilot Phase 2. Pilot Phase 2 is the main pilot period for the project, when the partners
aimed to recruit 400 carers (100 per pilot site) to trial the Skills Zone that has been designed,
built and interactively tested during earlier phases of the project. The findings from this
baseline survey have informed WP3 Content Creation and WP4 Pilot Deployment during Pilot
Phase 2 and will inform WP5 Exploitation and Commercialisation.
2. Security, privacy and ethics
Partners in the four test bed sites agreed to follow the guidelines outlined in Deliverable
D2.1: User Engagement Methodology and Deliverable D2.2: Privacy Framework and Ethical
Checklist. The guidelines about ethical issues within the DISCOVER project are written to
inform partners: they may not necessarily point to clear answers but deviation from these
guidelines should, however, only be made after careful consideration of the ethical issue in
question. The partners also agreed to reproduce the relevant documents developed by The
Open University in their native languages so that the documents are accessible to
participants in this project, carers and the people they care for and stakeholders: such as care
agencies, carer organisations, older people organisations, local government and
municipalities.
2.1. Privacy Framework and Ethical Checklist
The Privacy Framework and Ethical Checklist for the DISCOVER project (see Deliverable D2.2:
Privacy Framework and Ethical Checklist) were developed at an early juncture as a necessary
and important part of the project by HDTI. A Privacy Impact Assessment (PIA) process was
developed that drew on different sources, notably that of the UK Information Commissioner.
Its importance was recognised, of course, as enhanced by virtue of (a) the position of carers
in relation to often very vulnerable older people; and (b) the propensity of new technologies
to gather personal information relating to the dynamics of caring relationships. Key facets of
the Privacy Impact Assessment (PIA) therefore focused on confidentiality and privacy;
consent, autonomy and choice; justice/fairness; inclusion; security; and dignity.
A template was developed to assist partners in conducting the PIA (see Appendix A in
Deliverable D2.2: Privacy Framework and Ethical Checklist). Partners completed the PIAs in
relation to each task where privacy issues were seen as arising or likely to arise. An ethical
checklist accompanied the PIA template (see Appendix B in Deliverable D2.2: Privacy
Framework and Ethical Checklist). The ethical checklists and PIAs were reviewed and updated
by each project partner as necessary to ensure they were considering the needs and rights of
all carers and cared-for people recruited to participate in the DISCOVER project.
Page 8 of 61
2.2. Ethics Approval
Ethics Approval for the project as a whole has been given by Birmingham City Council
(Appendix 1) and for recruiting participants, and collating and analysing data collected from
across the 4 pilot sites by The Open University (Appendix 2). The information sheets and
consent forms and impact evaluation tools were developed by The Open University and
translated by the other partners into their native languages. Partners agreed to abide by the
methodology approved by the Open University and detailed in Deliverable D2.1: User
Engagement Methodology.
All partners agreed to abide by the ethics guidelines of the European Commission and their
own country. Information about the legislation re ethics guidelines of the European
Commission and partner countries is detailed in Deliverable D2.1: User Engagement
Methodology. Approval for each partner country is detailed below.
2.2.1. Greece (AUTH)
The DISCOVER pilot (research) protocol in Thessaloniki, Greece was approved by
the bioethics committee of the Medical School of the Aristotle University of Thessaloniki
(approval number 94/26-6-2014, Appendix 3).
The researchers followed the guidance set out in the following directives and laws: The Data
Protection Directive 95/46/EC of the European Parliament and of the Council of 24 October
1995, serves as the reference text for data protection issues throughout Europe, and also
requires that each Member State set up an independent national body responsible for the
protection of these data.
Law 2472/1997 protects individuals with regard to the processing of personal data. According
to article 15, the Personal Data Protection Authority is responsible for the implementation of
this law and all other regulations pertaining to the protection of individuals from the
processing of personal data.
Law 2472/1997 refers to the protection of personal data and privacy in the electronic
telecommunications sector and amendment of law 2472/1997.
2.2.2. Spain (INTRAS)
Participants in DISCOVER were recruited from outpatient memory clinics and residential care
homes in Zamora. Ethics approval was given by the Board of the Provincial Hospital of
Zamora (Appendix 4). During the project, the two ambassadors, Dr. Manuel Franco, Head of
the Psychiatry Unit at the Provincial Hospital of Zamora and Dr. Ignacio Toranzo were kept
informed about the progress of the project. Every 3 months there was a meeting between
the ambassadors and the technical team from INTRAS, with representatives/coordinators of
the DISCOVER main activities in INTRAS to inform about the progresses made in the project,
potential constraints, and to receive counseling about the best way to proceed.
Page 9 of 61
Although this project involves human participants, it was not necessary to seek approval
from a Clinical Research Ethics Committee (Spanish law [223/2004]) because DISCOVER does
not include clinical trials.
INTRAS followed the Scientific Good Practices Code of the CSIC (Spanish Highest Board for
Scientific Research) and were abiding by the requirements of their national laws concerning
the process and the transfer of data in this kind of activity and research [Regulations:
ORGANIC LAW 15/1999 of 13 December on the Protection of Personal Data / Royal Decree
1720/2007, of 21 December, which approves the regulation Implementing Organic Law
15/1999, of 13 December, on the Protection of Personal Data].
2.2.3. The Netherlands (ASTRA)
In The Netherlands there was no need for special approvals for the research work necessary
for DISCOVER. In the course of the DISCOVER trials there was no collection or storage of
personal data by ASTRA. The participants decided for themselves what personal
characteristics or data they want to share.
On line security and data protection was handled according to the rules and guidelines
described in the Wet bescherming persoonsgegevens (Wbp: Law to protect personal data).
The ‘College Bescherming Persoonsgegevens (CBP)’ i.e. the Dutch Data Protection Authority
(DPA) http://www.dutchdpa.nl/Pages/home.aspx is responsible for the monitoring of this
law. Localised trials were headed by local authorities and thus any collecting and storage of
data was protected by the rules and regulations that all Dutch municipalities have regarding
personal data (Wet gemeentelijke basisadministratie persoonsgegevens, Wet GBA).
When necessary the ECG Centrum voor Ethiek en Gezondheid (Centre for Ethical and Health
issues) and the NEN, Netherlands Normalisation institute will be consulted. As yet there was
no need for this. The latter are responsible for monitoring the standards and protocols
regarding online security and data protection in The Netherlands; for instance the ‘Code voor
Informatiebeveiliging’ which is the Netherlands version of the British Standards 7799: NEN
ISO 27001 and NEN ISO 27002 are applicable. Laws concerning medical research with
participants and patients are WMM and WGBO, which give guidelines for scientific research
as a whole and the protection of people who cannot speak for themselves.
2.2.4. The UK (OU)
Ethics approval for recruiting participants and collecting data in the UK, including iterative
and beta testing of the DISCOVER materials before they are used by participants in the other
pilot site countries, and analyzing data from across the four pilot sites was given by the
Human Research Ethics Committee at The Open University (Appendix 2).
No UK legislation provides guidance on (or requirements for) effective user engagement in
social research. The researchers abided by good practice set out in the guidelines of the UK
Social Research Association (http://www.the-sra.org.uk/documents/pdfs/ethics03.pdf) and
the requirements of the Data Protection Act (1998).
Page 10 of 61
3. Pilot Profiles
Each pilot site was selected to demonstrate that DISCOVER can provide an effective solution
for carers across a number of European countries, with differing digital infrastructures.
Carers from these countries have differing social and economic backgrounds and are carrying
out their caring roles in a variety of settings: their own homes (for resident relatives), the
homes belonging to relatives or friends, homes belonging to people who are not family or
friends, day care centres and residential care homes. A brief overview of each pilot site is
given below and further details can be found in the DoW.
3.1. Greece
Thessalonica has a population of around 1 million citizens. Thessalonica is Greece's second
major economic, industrial, commercial and political centre, and a major transportation hub
for the rest of south eastern Europe. In recent years, the city has suffered industrial
restructuring and lost many jobs; while it is moving toward a more service-based economy.
Care services in Thessalonica, as in the rest of Greece, are provided either by municipal and
societal organisations or from families and private carers, often immigrants who may be
uninsured. The carers often lack any formal education or appropriate certification to perform
these kinds of services.
The Greek pilot is in Thessalonica, coordinated by the Medical School of Aristotle University
of Thessalonica (AUTH) and focuses on training of formal and informal carers in the digital
skills that they should acquire. Municipal and other societal facilities have been selected for
their access to the target population, average socio-economic status, and proven interest and
effort in enhanced social services and new technologies. These chosen sites reflect the
diversity of the carers. All facilities and carers, work directly with large populations of elderly
and have earned the respect and acceptance of the local populations. Staff and older people
at the selected residences are receptive to be trained in and learn new ICT technologies.
Moreover, at these places there is also equipment and basic infrastructure such as internet
connection in situ. Finally, such residences belong to a wide community of the Central
Macedonia region, so the impact of the activities that are carried out there will be
disseminated to the rest of the nearby residences.
Participants were recruited from the following institutions that have a large number of
domiciliary care workers.
• Day Care Centres in Thessalonica for older people with Alzheimer’s
• Private homes via video/teleconference or email.
3.2. Spain
The Spanish pilot is in the Zamora and Valladolid provinces, at INTRAS’ facilities based in the
cities of Zamora, Valladolid, Coreses and Toro, as well in different collaborating centres in the
community.
.
Page 11 of 61
Zamora is situated in the north-west of Spain and it is one of the Spanish provinces with a
higher percentage of elderly people and depopulated and rural areas - 65% of its population
live in small rural towns. In this context, ICT solutions designed to improve the quality of life
of elderly people and their carers are of utmost importance, to enable delivery of accessible
training, social and health services. INTRAS’ facilities in Zamora are situated in Zamora (city),
Toro and Coreses. Valladolid is a province situated in the west of Spain, whose capital city is
also called Valladolid and is the seat of the Regional Government of Castilla & León Region. It
is the 13th most populated city in Spain with 315.522 inhabitants. Castilla y León represents
both one of the largest regions in Europe, and the most over-aged and depopulated region in
Spain, what entails several health & social changes and challenges for which adequate
solutions need to be found.
Relevant stakeholders in the DISCOVER project are the Zamora Provincial Hospital and the
Social Action Centres building upon the permanent cooperation that exists among INTRAS
and these organizations.
INTRAS is a non-profit organisation founded in August 1994 whose main aim is to improve
the quality of life of people suffering from mental disorders, disabled people, elderly people
and their caregivers. Currently, INTRAS is composed of 8 centres in 4 different provinces in
Spain with over a hundred of professionals, mainly from psychiatric, psychological, social and
economic fields who combine research, training and healthcare. The different facilities
managed by the Foundation offering different social-health services for the target group are:
the Psycho-sciences Institute (IBIP Lab); a Psychosocial Rehabilitation Centre, a Residential
Centre, two Labour Rehabilitation Centres, two Educational Centres, two Day Care Centres,
13 supervised flats, and two clinical units for cognitive rehabilitation of older people.
Additionally there is a Communitarian Support Team composed of one psychologist and two
social educators that offers treatment and support of the patient and their carers.
INTRAS offers its treatment and intervention services annually to over a thousand patients
and carers. From INTRAS’ standpoint, the ageing process, along with prolonged and severe
mental illness may increase the dependency, and in these situations the families often
assume a greater responsibility for providing care. This care translates into a high burden for
the caregiver as well as a great loss of free time, and requires a range of knowledge to carry it
out. To face these difficulties, INTRAS offers informal caregivers different Psycho-education
programs and other interventions to support them and to improve their quality of life. But
these interventions are not straightforward. Many families have multiple problems to
address therefore do not necessarily have time to attend conventional treatment.
Additionally, many families are afraid or reluctant to go to a health centre, as there may be
some perceived stigmatization. This can be even more complex in the rural population where
resources are limited and the possibility of stigma is greater. Therefore ICT based
technologies are an ideal means to overcome distance and provide cost-effective
interventions. Moreover, the empirical evidence shows that remote access would bring
equivalent benefit to some traditional face-to-face therapies.
Page 12 of 61
Informal carers have been recruited from the following institutions
INTRAS’ Centres:
• Psychosocial Rehabilitation Centre (Zamora)
• Community support teams (itinerant) (Zamora)
• Day care centres and Residence facilities (Zamora)
• Clinical Units
Other stakeholders:
• Psychogeriatric unit of the Provincial Hospital of Zamora (Zamora)
• Social Action Centre of Zamora
• Virgen del Canto Residence Facility (Toro-Zamora)
• HH. de los Pobres Residence Facility (Valladolid)
Formal carers were recruited from the staff of INTRAS’ day care centre and the Toro
residence facility for Pilot Phase 1. These samples will be increased by other candidates
interested in participating, identified though INTRAS CV database and through public
advertisements at INTRAS’ web page, existing social support networks, newspapers, and
newsletters.
3.3. The Netherlands
There are 2.4 million (unpaid) carers in the Netherlands. These are people who spend more
than eight hours a week or more than three months caring for an elderly, disabled or
chronically ill relative who needs their help. Another 15,000 people act as volunteers, caring
not only for people with a physical or mental disability, a chronic or life-threatening illness or
emotional problems but also for their carers. This is not instead of professional care, but in
addition to it.
The Netherlands has a particularly diverse population and covers the whole social spectrum
in its population from the poorest to the wealthiest including some of the most deprived
areas in the country. Of the population of 16.6 million of the Netherlands there are 1.83
million whose country of origin is not Western-European and 1.5 million of Western-
European origin. There are 7.35 million households and the average life-expectancy for men
is 78 years and for Women 82 years. The average age is 38.7 years (Gradually increasing: in
1990, it was 36.6). 80.6% of the population are classified as ‘Healthy to Very Healthy’.
The numbers of immigrants stand at 143,000 comprising those from EU countries and
returning Dutch citizens. There are 89,109 emigrants (down from 116,000) and in common
with many EU countries the Netherlands is addressing the support needs of asylum seekers
mainly from Somalia, Iraq and Afghanistan.
Pilot participants are engaged from Kerkrade region and the region of Alphen aan den Rijn
(bollenstreek). Also nationwide recruitment is undertaken through the media and national
umbrella organisations. Astra-Com focuses on digital skills training of both formal & informal
carers engaged in the pilot. The local and regional organisations for informal carers will
Page 13 of 61
address the digital skills needs of informal carers. The regional organisations for professional
care will address the digital skills needs of formal carers.
Informal carers are recruited through the following local and regional organisations,
organised by the local authorities:
• Homecare organisation(s)
• Wmo Platforms (elderly)
• Informal care platforms
• Support and information centres for informal Carers
• Advisory Board of Senior Citizens
• Unions of the Elderly
• Computer training organisations for the elderly
• Public Library and special focus groups of/for informal carers.
Formal carers are recruited through the following organisations:
• Meander (Kerkrade)
• Participe (Alphen aan de Rijn/ bollenstreek)
Page 14 of 61
3.4. The UK
Birmingham has a population of just over 1 million and the highest number of the people in
the country who are both income and employment deprived. Deprivation is associated with
high prevalence of unpaid care, as well as with high levels of illness, poverty and
unemployment and social exclusion. 10% of Birmingham’s population provide unpaid care of
these, significantly, 25% (25,327) are providing over 50 hours of unpaid care per week.
Amongst people of working age, the economically inactive were most likely to be carers.
Carers are the most socially excluded group of people; more likely to live in social housing
with 12% themselves in poor health.
In addition Birmingham is the most ethnically diverse city in the UK with more than a third of
its population from BME communities and by 2026 is expected to become a plural city
without any majority ethnic group. This diverse population brings challenges in meeting their
needs and those of carers and a rise of 18% in numbers of people with limiting long term
illness is forecast (2008 – 2030).
It is recognised that carers represent a very diverse group of the population who will have
varying needs and skill requirements. With Birmingham there is the challenge of an ethnically
diverse city that will need to be addressed to ensure a representative, meaningful sample is
selected for the pilot.
Informal carers were recruited through:
• the Birmingham Carers centre
• Birmingham Carers Partnership Board
• Health and Well Being Partnership
• Birmingham City Council Adult & Communities
• Birmingham City Council HR Learning & Development
• Age Concern Birmingham
• Carers UK – Birmingham Branch
• Birmingham Carers Association
• Carers Emergency Service for Carers
• BME carer champions
Formal carers were recruited through care agencies.
Page 15 of 61
4. Participants
Participants in this project were providing domiciliary care for the people they were caring
for, such as
o Activities of daily living (ADLs) such as personal hygiene, meal preparation etc
o Extended activities of daily living (EADLs) such as shopping, finances, attending
healthcare appointments
o Some nursing activities such as blood glucose monitoring, stoma care, PEG
feeding
Carers were not expected to be providing specialised medical care as developing learning
materials for such carers is outwith the scope of this project.
For the purposes of the project, carers were regarded as either informal or formal carers.
Informal or family carers are carers who are caring for at least one relative, friend or
neighbour. They may be paid to undertake this care but are most likely to be unpaid. They
currently have, or had previously, a work role outside of this caring role.
Formal carers or careworkers are carers who are caring for at least one person who is not a
relative, friend or neighbour. They are paid to undertake this role, by either a care agency, a
residential care home or the people they care for and they regard this as their main work
role.
These differences between formal and informal carers in remuneration for providing care,
the requirements of any care agency employing or supporting carers, and carers’
relationships with the people they care for may influence their motivation to learn.
Carers participating in the project were aged between 18 and 75, with a focus on working –
age carers aged 18 – 64. Any carer wishing to join the project who was over 75 was welcome
but partners did not actively seek to recruit the ‘older old’. For Pilot Phase 1, carers could be
current or past carers and there was no restriction on the age of the person they were caring
for. For Pilot Phase 2, carers are currently caring for at least one older person (aged 65 and
over).
5. Recruitment
Recruitment for Pilot Phase 2 has built on the experiences of recruitment for Pilot Phase 1
across the 4 pilot sites.
5.1. Learning from Recruitment during Pilot Phase 1
Recruitment was challenging for some countries, notably the UK and the Netherlands. In the
UK, cuts in public funding had made it difficult for some of the carer organisations to engage
with DISCOVER as fully as they had intended at the start of the project. This meant we had to
Page 16 of 61
seek alternative routes to reach carers which slowed recruitment down considerably. In the
Netherlands recruitment required an amended approach after initial attempts inviting carers
to attend a session where they could find out more about how learning digital skills could
support them in their caring role were unsuccessful. Carers in all four pilot sites are very time
short. In Greece and the Netherlands approaching carers was found to be particularly
challenging due to their commitments and limited time and energy to engage in new
activities.
The posters and invitation letters used to advertise workshops and focus group events were
visual and engaging through speech bubbles and repeated the message that the project is
carer driven. Carer feedback indicated that this was well received. However, it became
apparent in all pilot sites that although some carers responded to individual letters of
invitation or posters and flyers displayed in carers’ centres or other public places, personal
contact was needed to reach the proposed number of carers for Pilot Phase 1. In some cases
this was through the project partners talking directly with care organisations to encourage
them to contact carers, and in other cases project partners directly contacted potential
participants previously identified by the care organisations. However, once carers join the
project, many of them are suggesting other individual carers and organisations to approach,
so participants for Pilot Phase 2 are being recruited through this ‘snowballing’ effect.
Project partners that are not directly involved in care services found that direct contact with
carers doesn't work. Contact needs to come through trusted organisations, such as carer
support organisations. Therefore a 2-step approach is required, to first engage with these
organisations who then, in a second step, invite the carers. However, engagement of external
stakeholders to reach out directly to carers relies on trusted relationships being built with
pilot partners, which requires time. In the UK, due to the organisations who had offered
support initially no longer being able to engage fully, and in the Netherlands, building new
relationships was more difficult than anticipated and took longer before the third party
organisations felt comfortable to reach out to their carer populations. It is clear that project
staff need to introduce themselves to the organisations, preferably through face to face
meetings. Each organisation works differently with carers resulting in a limited transferability
of approach.
The UK pilot found that during recruitment sessions informal carers were reluctant to engage
with the city council because many carers had had numerous interventions from the local
authority and other agencies and felt that 'this is just another request from the organisation
for my time that doesn't gain me anything' or that 'this is just another project that doesn't
deliver after the funding runs out'. It was observed by the pilot sites that this could be true
for other countries too as public sector budget cuts are common across Europe and carers
have lost support. Contact from the OU on the other side was welcomed and people felt
valued because a university researcher contacted them. The OU was seen as a neutral
outsider that showed interest in carers’ needs and issues.
In Spain, participants' first contact with the project was face-to-face during memory
workshops in a residential setting. Carers were motivated to participate after observing staff
using the Skills Zone. In the UK a first round of face to face recruitment sessions and focus
groups to identify user needs allowed the project to collect contact details of 20 carers.
Page 17 of 61
These carers were contacted again by telephone, by the same person, to invite them to look
at the improved Skills Zone in response to their initial needs statement. Carers were pleased
about the update and now felt comfortable to recommend other carers as potential
participants.
Some pilot groups were run as a combination of focus group with workshop to introduce the
Skills Zone. Facilitators found it was vital to go at the learners’ pace to ensure they felt
supported and give them confidence to use the Skills Zone. In the UK many carers that were
recruited through third sector partners were not familiar with email. During the first session,
they were shown how to set up an email account and registered with an email provider.
Initial information had to be provided as hard copy. This clearly demonstrates that pure
online engagement won't work for this target group. However, it needs to be considered that
these carers are seen as a hard to reach group that does not constitute the majority of
carers.
5.2. Recommendations arising from Pilot Phase 1
1. Project partners will continue to develop relationships with trusted organisations to
aid recruitment of carers
2. Face to face focus groups and training workshops are vital to get carers initially to
engage with DISCOVER
3. Encourage carers and stakeholders who participated in Pilot Phase 1 to recommend
other carers to join Pilot Phase 2.
4. In Kerkrade, in the Netherlands, the majority of the informal (and even formal) carers
don’t know anything about ‘computers’ and are averse to using it, according to the
focus group. So for Pilot Phase 2, carers will be invited to join groups that are mainly
offering things they dearly want: meet each other, get answers to difficult questions
they have, find experts when needed. This exercise has been named ‘Leuk voor
Elkaar’ (Being nice, kind & compassionate) to one another. The DISCOVER Skills Zone
will be presented to all ‘Leuk voor Elkaar’ groups, together with other digital
resources and applications.
5.3. Recruitment during Pilot Phase 2
A protocol for user engagement in Pilot Phase 2, building on the learning and experiences
gained by partners during Pilot Phase 1, was developed by the OU to ensure consistency
across the 4 pilot sites. The key stages of the protocol relevant to completing the baseline
survey are
• Carers to be recruited via ‘trusted friends’ and via snowballing, where carers already
recruited recommended other carers to join the project
• Face-to-face training workshops to get participants started with DISCOVER
• A ‘Getting Started’ manual to be sent to participants unable to attend training
workshops
Page 18 of 61
• On joining DISCOVER participants will be asked to complete the initial impact
questionnaires
• Data to be sent to the OU for analysis
Informal carers
Partners worked with carer support and community organisations that support informal
carers to approach pilot participants. This ensured that communication with informal carers
happened through a trusted intermediary and that venues for meetings were well-known.
Formal carers
Formal carers were recruited through their Employers. Where consortium partners were
themselves employers of formal carers, these were engaged in the pilot. All partners have
established links to care employers that are supportive of the project and willing to engage
their employees.
Across 3 of the 4 pilot sites: Greece, Spain and the UK, recruitment was slow but steady: to
date 297 participants have been recruited (99% of target: 300 participants). In contrast,
recruitment in the Netherlands has been extremely challenging and has had a very significant
adverse effect on the overall progress of Pilot Phase 2. The Dutch partners only started to
recruit participants in Month 31. To date they have recruited 50 participants (50% of their
target: 100 participants).
Data per country is given in Table 1, and further details of recruitment per pilot site are given
in the following sections.
Table 1: Number of Participants (carers and cared for people) recruited to date for Pilot Phase 2 [by
country]
Greece Spain The Netherlands* UK
Informal carers 61 67 40 96
Formal carers 25 38 8 4
Cared-for people 0 2 2 4
Total 86 107 50 104
Total number of participants (carers and cared-for people) across all 4 pilot sites: 347
*from Month 31
5.3.1. Greece
Most of the carers for Pilot Phase 2 were recruited by: Greek Association of Alzheimer’s
Disease and Relative Disorders, Day Centres (Saint Helen and Saint John), Medical School of
Page 19 of 61
Aristotle University of Thessaloniki, AHEPA University Hospital, Hellenic Open University, and
Group of Relatives of people suffering from Alzheimer of Thessaloniki.
Recruitment for Pilot Phase 2 has been challenging due to
• Lack of commitment to the support offered by some organisations
• Lack of interest of formal carers due to their “heavy work schedule”
• Summer period (holidays) which affected the availability for participants/stakeholders
The training sessions/workshops were held at the premises of the Greek Association of
Alzheimer’s Disease and Relative Disorders, in a comfortable room equipped with 8 personal
computers in groups of 8 participants maximum.
Training sessions/workshops were running once a week for an hour. Participants had the
opportunity to become familiar with different services and tools of the DISCOVER Learning
Zone. They were introduced to the DISCOVER platform and the basic knowledge of the
internet technologies and services. The goal was to help carers feel confident to use the
DISCOVER platform on their own in the next steps. We found that the 8 weeks duration was
suitable and face to face meetings were necessary.
5.3.2. Spain
106 participants were recruited in this period for Pilot Phase 2 (67 Informal carers, 38 formal
carers, 2 cared-for people). Near to 300 caregivers were approached directly by INTRAS pilot
team or indirectly by the stakeholders supporting the project. The difficulty to engage 100
caregivers in this period had to do with many factors, among which were some we could not
overcome: i. on one hand very young carers are self-sufficient in managing ICT and although
they observe the benefit of the DISCOVER platform by the innovative methodology on which
it is designed, this does not appeal to everyone by the importance of regular use raised in the
pilots, on the other hand if we talk about older carers with non-existent or reduced
experience with ICT, those are the carers, who as expected, have more difficulty to get
involved; ii. some of the stakeholders that had already given us their support, turned out to
suffer alterations in the management team, thus, further meetings had to be arranged to
present the project to the new directors, and depending on the entities, the final answers
were given 1-6 months after the formal meetings; iii. was also noted by some entities a lack
of commitment to the support offered initially. iv. this period included the summer period
(holidays) which affected the availability for contacts and for first meetings with
carers/potential participants or even by the external entities that established with INTRAS a
support relationship for recruitment.
Carers in the Pilot Phase 2 were recruited through or signalled to the pilot team for further
contact mainly by:
- Memory workshops
- Communitarian Team
- INTRAS Residence
- INTRAS Day Centre
Page 20 of 61
- Zamora Hospital
- Workshop Innovation and Technologies for Integrated Mental Healthcare
- “Get ahead of Alzheimer’s” Conference promoted by INTRAS and supported by the Zamora
City Council
In addition, recruiting caregivers has been challenging as here in Spain we are working with a
very difficult scenario, an intervention area characterized by its rurality, and especially in
cases that demonstrate the absence or reduced contact with family support and limited
familiarity with ICT.
The 107 recruited participants received information about the project and the Skills Zone,
and immediately after having given their informed consent they received the login data with
supporting material that fulfils two objectives: i. facilitate access to the platform with an easy
description of all the steps for the first entry and to ensure an independent use; ii. used as a
motivating and reminder method.
5.3.3. The Netherlands
The setting up of ‘Leuk voor Elkaar’ groups took more time than expected, despite the
enthusiastic responses. Also, the requirements of the focus group regarding the DISCOVER
product took more time to be implemented than planned. For those reasons there was a
delay in starting the recruitment of testers, which could compromise the Dutch input in the
DISCOVER project regarding the promised 100 testers. Therefore, following discussions with
the OU, we decided to approach individual carers directly, starting 20th
of October, to ask
them to join the test phase of DISCOVER by filling in the initial impact questionnaire.
Participants are then given step by step instruction of how to log in to the DISCOVER portal
and Skill Zone. In the step by step instructions those parts of the DISCOVER Skills Zone that
were not yet fully adapted to meet the needs identified by the Dutch focus group were
explained.
50 carers and cared for people were recruited for Pilot Phase 2. Permission was given by
professional care organisations to address the formal carers working for them but this took
more time as these organisations are in the middle of a large scale national transition of
Health and Social services from the national level to the municipalities. The municipalities are
at the moment negotiating with the professional care providers about next year’s contracts.
5.3.4. UK
104 participants were recruited for Pilot Phase 2. Partners in the UK have recruited these
participants in a variety of ways – through the Birmingham City Council Citizen Panel, through
carer organisations, through attending public events related to care and caring, through
introductory workshops and through snowballing.
All participants received information sheets and signed consent forms to participate in the
project, and those attending workshop/focus groups agreed that the session could be audio
Page 21 of 61
recorded and photographs taken. Participants were invited to attend workshop/focus
groups, run by the OU and BIRM in various locations across the City to facilitate travel for the
carers, where they were guided through the DISCOVER Skills Zone and given their log-in user
names and passwords. Carers without email accounts were helped to set up google mail
accounts using the guidance provided. Some participants found it difficult to attend these
face to face sessions due to their work commitments and/or their caring responsibilities so
they were helped to access DISCOVER online directly.
There has been a lot of interest in DISCOVER from carers, carer organisations and care
agencies and the number of recruited participants does not really reflect the amount of work
and effort UK partners have given to recruitment. Over 500 prospective participants have
requested details of the project including the information sheets, log-ins and passwords but
when these enquiries were followed up many carers and stakeholders were unable to find
the time to participate or in some cases were no longer carers. However, it was pleasing to
note that even if these potential participants did not have time to join the project, many
were supportive of our aims and felt DISCOVER was filling a gap in carer support, and those
who explored the Skills Zone felt it was appropriate and interesting for carers.
Reaching cared-for people has been challenging. Although recruited carers are encouraged to
share DISCOVER with the people they care for, only a few carers report that they have tried
this. Of these some report they have encouraged the people they care for to look at
DISCOVER but they are not well enough or not interested at the moment. However, the
majority of carers see DISCOVER as their own space, giving them an interest that does not
involve the person they care for. They feel that caring generally takes over their lives and
they welcome an opportunity to do something different. It has been interesting to note that
carers feel being engaged in DISCOVER is a ‘legitimate’ use of their time which stops them
feeling guilty that they are spending time away from the person that they care for.
Page 22 of 61
6. User Methodology
Building on D2.1 User Methodology Handbook the OU prepared information sheets and
consent forms for the following 3 groups of participants: Formal and Informal Carers, and
Cared for people who are ‘buddy learning’ with their carer. These follow a similar format and
an example of this for ‘Carers’ is provided in Appendix 5.
The OU trialled these information sheets and consent forms with over 20 informal carers and
older people initially and the response was very good. The participants reported that they
found the information sheet helpful and informative and they were clear about their
involvement in the project. Carers also were pleased that the consent form asked for their
consent to various levels of engagement. In particular, some carers were happy to join the
project, and to be audio recorded, but were only willing to be photographed if they could not
be identified, for example they preferred to be viewed from behind, or with just their hands
on the PC keyboard, to demonstrate them working with the DISCOVER platform on the PC or
tablet.
Figure 1: A carer trying out DISCOVER on a tablet and a smart phone
The information sheets and consent forms were verified by pilot site partners and translated
into the pilot languages – Dutch, Greek and Spanish. They were used in all 4 pilot sites with
participants in Pilot Phase 1 and updated for use in Pilot Phase 2.
The signed and dated consent forms are hard copy so these are stored in locked cupboards in
the various pilot sites to which only project partners have access.
A code was developed to identify individual participants across the 4 pilot sites, while
maintaining their confidentiality and anonymity.
Each participant and the person they care for was given a unique code so that their progress
could be monitored across the duration of the project and matched with their learning
through the assessment tasks and computer generated feedback. This code is used by the
project partners but the participants themselves have an ‘easy to remember’ user name and
password. The coding sequence is described below.
Page 23 of 61
Each participant’s unique code reflects the phase of the project, their country and their role in the