The main topics: - Coeliac disease is also a psychological and social burden. - Each coeliac experiences coeliac disease in a distinct and individual way. - Support of the close ones is important. - Treatment causes challenges in the everyday life. - Social situations are key aspects of well-being. - Ways to support the coeliac

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

3. Background

4. Finland & Finnish Coeliac Society
• Prevalence of coeliac disease in Finland
2 % -> over 100 000 persons
• 35 000 diagnosed coeliacs
• Nationwide patient assocation
• 21 600 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 Well-
being 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 Well-
being for Coeliacs -Project
• 2012 -2015
• 2 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 585 000 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

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.”

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.”

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

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 well-
being
• 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 coealic 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”?”

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 well-
being
• Developing peer support
• Practical tools for supporting the social
and psychological well-being
– A website
– A workbook

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

44. www.gluteenitonsuunta.fi
• 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

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

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

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:
www.gluteenitonsuunta.fi
Presentation available in Slideshare:
www.slideshare.net/Keliakialiitto
Contact:
Eeva Laine
Project manager
+3583 2541 335
eeva.laine@keliakialiitto.fi