Empowering persons suffering from chronic disease Workshop to consider “Tackling the Societal Challenges of Horizon 2020” UASnet Conference 2014 in Copenhagen.

Empowering persons suffering from chronic disease

Workshop to consider

“Tackling the Societal Challenges of Horizon 2020” UASnet Conference 2014 in Copenhagen on October 23rd and 24th

Aileen Robertson PhDPublic Health Nutritionist

&Anne-Le Morville, OT, Ph.D.

Metropolitan University College Copenhagen

Denmark

Horizon 2020 Health Demographic Change and Wellbeing Work Programme

FP1..

EURO-PREVOB Prevention of Obesity in Europe

www.europrevob.eu

•Improve understanding of determinants of inequalities in obesity;•Indentify initiatives that can impact positively on determinants;•Develop & pilot tools to assess impact of policies on determinants;•Develop, disseminate guides & recommendations for best practice

Sustainable Prevention of Obesity through Integrated Strategies

http://www.spotlightproject.eu/

http://www.euro.who.int/__data/assets/pdf_file/0003/247638/obesity-090514.pdf?ua=1

WHO Collaborating Centre for Global Nutrition & Health

Copenhagen

EU DG SANCO

1 Inequities in obesity

Overweight & obesity in women, by educational status (2009)

Finland

Finland: women's mean BMI by education status, 1982-2002

23

24

25

26

27

28

1982 1987 1992 1997 2002

BM

I

Lowest

Medium

Highest

No differences in men

Portugal

Portugal: obesity prevalence trends by gender and educational level

02

46

810

1214

1618

1995-6 1998-9 1995-6 1998-9

men women

Pre

va

len

ce

(%

)

under 6 yrs school

6 - 12 yrs school

over 12 yrs school

In general, obesity is rising most in the lowest socioeconomic groups , especially women & children.

Adult obesity prevalence in France by household income

Interventions have different impacts across social groups

Few obesity interventions have been evaluated for their effectiveness in low socioeconomic groups.

Education campaigns alone are less effective in low socioeconomic groups and make inequities worse.

People from low income groups do not engage well with interventions, and high numbers drop-out.

Population-based policies, such as restrictions on marketing to children, likely to have greater impact on inequalities than interventions targeted at individuals.

“First do no harm” –

well-intentioned interventions can make inequities worse

How inequities compound over lifecourse

Pregnancy Adulthood Health problemsChildhood

More likely to have high

or low birthweight

Less likely to be

breastfed

Poor housing, unreliable means for cooking/

refrigeration

More likely to suffer financial hardship

from consequences of illness

More likely to gain weight

during pregnancy & less likely to

breast-feed

More likely to experience

chronic stress

More likely to have difficulty affording

health care

Less likely to be able to get time off work or

afford transport to health services

More likely to have other health

problems made worse by obesity

More likely to experience

discrimination in health services

Low paid, repetitive jobs with inflexible opportunities for physical activityLess likely to be

exposed to & develop tastes for variety of foods

More likely to live near

outlets selling cheap, high

energy dense food

Less encouragement & social support

More likely to experience

food insecurity

Fewer options for safe outdoor

play or active transport

Conceived by a woman with

poor nutritional status

More time spent watching TV &

exposure to advertising

Mother without

access to paid maternity

leave

Socioeconomic context and position

(society)

Differential exposures

(social and physical environment)

Differential health outcomes

(individual)

Differential vulnerabilities

(population group)

Differential consequences

(individual)

Example:

Barriers in access to PHC

Intervention:

Improving uptake of services within

primary health care

Levels at which health inequities can be addressed within primary health care services

Socioeconomic context and position

(society)

Differential exposures

(social and physical environment)

Differential health outcomes

(individual)

Differential vulnerabilities

(population group)

Differential consequences

(individual)

Social stigma can disempower

& compound marginalisation

Intervention:

Anti-discrimination

policies that are non-judgemental

or patronising where

professionals demonstrate

empathy

Levels at which health inequities can be addressed within primary health care services

Sustainable Prevention of Obesity through Integrated Strategies

http://www.spotlightproject.eu/

WP 1 Coordination of SPOTLIGHT WP 2 Individual-level self-regulation determinants WP 3 Obesogenicity of environments WP 4 RE-AIM of multi-level interventions WP 5 Inventory of European community based interventions WP 6 Success- and failure factors for implementation WP 7 Dissemination and take-up of findings WP 8 Data management and data storage

Workpackages

Work Package 6

OBJECTIVES:

1. To identify determinants of successful adoption and implementation of multilevel intervention approaches in 3 different European countries

WHAT WORKS? (Or DOES NOT WORK??)

2. To translate these findings to recommendations for effective public health interventions and ”Best Practice” and DISSEMINATE.

Project, provincial town, Denmark

Some initial findings

Timing of the project clashed with renovation causing half the citizen/target group to move

19

One aim of the project was to find out whether such a huge renovation project can be actively used in a local community project. Whether it was a way to get people to stick together and come up with some common statements and preferences about what they want for the area. This did not happen. (Project Manager)

We drowned in the [huge overarching] area renovation project of half a billion kroner. (approx 1 billion Euros)(Project staff )

Lack of Needs Assessment & Common Vision

20

What are the needs? We really didn’t know when we started. (Project staff)

We cartwheel around the place, because as project manager and staff we really do not know what we want and which goals we are aiming for (Manager)

It is a little like "now we work a little here, and then we work a little here" and there are no goals or vision, no overview of what we’re doing (Close partner)

Poor Communication and Cooperation

21

 We‘ve been talking for half-a-year now and the great directors ………….have not even been able to figure out how to work together yet! (Project staff)  For cooperation to function, that's a challenge! And... Had it been two other personalities, it might have gone differently, but our close partner and project manager have had difficulty working with each other (Project staff)

... what exactly went wrong...? Something in relation to project management.... There is constantly some 'twist' between our close partner and project manager (Project staff) No money has been allocated.., that is, we are dependent on others without offering anything in return…………. (Project manager)

Unable to Reach those most difficult to reach (and those most in need)

22

[the citizens] have not asked us to come. It's not their desire. It is a project by the authorities for politicians ..who thought it was a really good idea, and something they wanted …. (Project Manager)

In relation to the families I work with, they have other issues to deal with and these are so overwhelming and take up so much time and energy that [project activities] are of no interest. [...] The most affected families are not reached (External Partner)  When some resident join activities others deliberately stay away:The problem is that the same 8-10 people take part in all the activities! This should never have been ! (Close partner)

Interesting statement

’They have other issues to deal with and these

are so overwhelming and take up so much time

and energy that [project activities] are of no

interest.’

Daily life includes all the activities and

’issues that one has to deal with’

The ’issues’ structures use of time and space

- And makes it difficult to participate in our intervention

’other issues to deal with and these are so overwhelming’

Lack of accessibility

Limitations due to illness, disease or legal/structural factors

Problems with friends or family

What happens when there is an overwhelming amout of issues to be dealt with and maybe even a lack of activities in daily life?

Quality of life decreases

Physical activities decreases

Social activities decreases

Passive activities increases

- boredom, lack of control and subsequent increase in disease

How do we prevent this?

What are the daily issues that are of importance to the user?

Only the user knows …

The aim of an intervention

To enhance wellbeing, empowerment and self-management

Find durable solutions to ’issues’ in everyday life Use welfare technology Focus on self-management and patient engagement Manage the symptoms, treatment, physical and

psychosocial consequences and lifestyle

A technical solution: An app

Engagement and self management through peer-groups:

Peer to peer discussions and ideas for managing disease in daily life

Taking part in peer-groups without the need for physical presence

Independent from health care professionals Independent interaction Follows the needs of the group members Easier access to health care providers

Our assumptions

Empowerment through experiencing personal growth as a result of developing skills and abilities

The peer-to-peer relation has a positive influence on how to handle and structure daily life (self-management)

Mutually committing peer setting will increase the possibility for sustainable outcomes

Enhanced well-being, empowerment and self-management will result in a better and timelier use of the health care services

Daily life issues

More satisfying activities = ideas for how to structure daily life, including health enhancing activities

Social activities increases = ideas/solutions to get outdoors and participate in social activities

Passive activities decreases = More satisfying activities enhances motivation for new activities

Appoint Group Leader to manage discussion & time and Rapportuer to report back

Task………. Basis for 2020 Horizon Call 2016/2017 –

Reduce Inequalities within EU: Design & test novel approaches to better empower clients & reach difficult-to-reach

(e.g. avoid ”blaming the victim”, being judgemental, exacerbating stigma)

Consider changes in current approaches to reach H2020 demand for ”Excellence, Impact & Implementation”

- Working environment – (e.g. Not accessible; or available when needed; friendly & inviting?) 6 minutes

- Approach as professionals (e.g. too ”professsional”; dispower by being ”judgemental”, not empathetic) 6 minutes

- Professional tools – (e.g. change out-dated technology?) 6 minutes

- SME´s – 3 minutes

Feedback and conclusion – 20 minutes

Group Work – 30 minutes