Supporting the Psychological and Social Well-being of People with Coeliac Disease

Transcription

1 Supporting the Psychological and Social Well-being of People with Coeliac Disease Presentation available in Slideshare: 11 September 2015 Eeva Laine Project manager

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3 Background

4 Finland & Finnish Coeliac Society Prevalence of coeliac disease in Finland 2 % -> over persons diagnosed coeliacs Nationwide patient assocation members 22 employees Founded 1976

5 Coeliac Society A strong expert party within society Expertise on nutrition Product information Contacts with medical research Lobbying and promotion of interests in regard to social security Our aim is to inform people with coeliac disease about good gluten-free life

6 A need for a new approach Feedback: You are too positive Although the treatment of coeliac disease is in principal clear, it s not easy The people with coeliac disease wish to have the legitimacy for the difficult feelings the disease brings with it. Our perception: Alongside information the people with coeliac disease also need social and psychological support.

7 It is not just a physical condition

8 Promoting Psycho-social Wellbeing for Coeliacs -Project Our aims: Find out what the psycho-social well-being of a coeliac actually entails Create methods and tools for supporting the well-being

9 Promoting Psycho-social Wellbeing for Coeliacs -Project employees Project manager Hanna Herno (psychologist) / Eeva Laine Project coordinator Management group Different experts in the field Funded by RAY (slot machine association) Total budget euros

10 On what we base our work? Survey of well-being Themes: how coeliac disease is experienced, psychological well-being, support from others Random sample 2% of the members of Finnish Coeliac Society Response rate 39 % 136 respondents

11 On what we base our work? Approx 100 stories on the life and experiences of coeliacs Written by people with coeliac disease, but also their close ones: partners, parents, children, friends Discussions with hundreds of coeliacs and their close ones.

12 Coeliac disease is also a psychological and social burden

13 Key findings 1. Each coeliac experiences coeliac disease in a distinct and individual way 2. Support of the close ones is important 3. Treatment causes challenges in the everyday life 4. Social situations are key aspects of well-being

14 1. Each coeliac experiences coeliac disease in a distinct and individual way

15 Always an individual experience Coeliacs are not a homogenous group Each person has a distinctive way to react and adapt to a major change in life

16 Experiences can be pure opposites One sees coeliac disease just through practical arrangements Another feels that the foundations of life are shattered I immediately renewed my flour shelf. This can be coped with. Can I ever eat anything any more? I felt desperate.

17 How was the diagnosis experienced? Relief Surprise Shock Loss

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19 The distinctiveness of the experience can result in loneliness The experiences of coeliacs are very different from one another. Even another coeliac does not necessarily understand one s feelings Can one find peer support? Could the individual nature of the experiences be considered in encountering coeliacs?

20 2. Support of the close ones is important

21 Acceptance and support of the close ones central to well-being Most (75 %) coeliacs get support from their close ones in regard to coeliac disease Home as the coeliac s safe haven At home the gluten-free diet is taken care of together My family reacts to coealiac disease as a positive challenge. We invent new delicacies together.

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23 Close ones don t always support One out of six (1/6) coeliacs gets no support from his/her close ones Big minority! A negative approach from a family member or a friend can hurt deeply Oh, we need to come up with something for you again. This is so complicated.

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25 3. Treatment causes challenges in the everyday life

26 Treatment causes challenges in the everyday life The treatment of coeliac disease is simple in principal, but demanding in everyday life Affects everywhere, five times a day, seven days a week The constant need to stay aware and on the look is straining Small things can become burdens, if encountered repeatedly

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28 Less room for spontaneity Meals need to be planned ahead with increased care Can affect one s social relationships When going out with friends I cannot just pop in the first cafeteria we come across. I always have to check it out first.

29 How do you feel when eating?

30 4. Social situations are key aspects of well-being

31 Social occasions central to wellbeing Coeliac disease is distinct from other diseases, as the medicine is food Meals mean treating the disease Meals are social occasions -> The treatment of coeliac disease is highly social and public

32 One has to stand out A coeliac can t just be an anonymous part of the crowd The disease needs to be made public Constant enquiries and questions Do people around understand? Can it really be so strict and precise? Well, what will then happen to you if you eat gluten?

33 When I tell of coeliac disease

34 The need to break social norms (= behave badly ) There are unspoken rules relating to the offering and receiving of food One has to ask about the food offered, maybe set its safety under question One has to decline food that has been prepared just for you One has to bring one s own food

35 Feeling outsider If the others don t remember, am I part of the group? Being part of the group can be complex when one cannot eat the same kind of food A coeliac can experience his/her difference as difficult and tries to fade it away When going to friends birthday parties as a kid I preferred not eating anything compared to revealing that I had brought my own food.

36 Do I cause extra trouble? It can be a challenge to tell others that one follows a strict gluten free diet, as one does not want to bother other people It feels at times difficult that others need to make an extra effort for the coeliac It still feels hard to visit people, because I feel that I cause so much trouble.

37 How does the coeliac feel in social situations? At times the coealic is forgotten and ignored how does that feel? How does one become understood and accepted? Am I so important for others that my special dietary needs are considered? Why do they make fancy cakes for other people, if one of the guests is not considered at all?

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39 Key findings 1. Each coeliac experiences coeliac disease in a distinct and individual way 2. Support of the close ones is important 3. Treatment causes challenges in the everyday life 4. Social situations are key aspects of well-being

40 Supporting the coeliac

41 What do we do? Increase understanding of the relevance of the psychological and social wellbeing Developing peer support Practical tools for supporting the social and psychological well-being A website A workbook

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43 Suunta a website and workbook for gluten-free well-being

44 A tool for supporting the psychological and social well-being of coeliacs Open for everyone, no registration needed A workbook version for those, who are not comfortable with using webservices Launched in April 2015

45 Suunta consists of Psychologist s views regarding the experiences of everyday life Exercises for mental well-being Stories and blogs The life of a coeliac discussed through comic strips and videos

46 Support from an expert The texts and tasks written by a psychologist offer perspectives on: Experiences of living the everyday life without gluten Acceptance of the coeliac disease Themes include e.g. social events, encounters with other people and the feelings related to meals and dining Created by Psyhologist Hanna Herno

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48 Exercises for mental well-being Themes: mental well-being, values, choices and bodily well-being One can do the exercises by himself Based on acceptance and commitment therapy Created by VTT Technical Research Centre of Finland and Dept of Psychology at the University of Jyväskylä

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50 Stories of coeliacs Coeliac disease has changed the lives of many it has affected personal relationships and challenged people to change The stories of others can bring new perspectives to one s own narrative and help to cope with the coeliac disease Currently includes some 50 narratives, anyone can send one s own story

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52 Blogs Experiences and discussion about gluten-free everyday life. Peer support

53 How has Suunta helped? I feel that I am stronger and I know that I can treat my disease. I can cope with other people s enquiries and odd comments without making a fool out of myself. Suunta helped me to come to know myself in a better and deeper way.

54 Please check Suunta-website: Presentation available in Slideshare: Contact: Eeva Laine Project manager