Supporting the psychological and social well being of people with coeliac disease eeva laine

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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

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  • Alkupuhe:
    Tänään puhuttu diagnoosista lääketieteelisestä näkökulmasta. Minun näkökulmani on täysin toinen. Diagnoositilanteessa ja sen jälkeen herää paljon käytännön kysymyksiä sairaudesta ja ruokavaliohoidosta. Samalla herää paljon muutakin. Erilaisia tunteita ja kokemuksia. Pelkoa, epätietoisuutta, surua, ärtymystä. Me katsomme arkea keliaakikkona keliaakikon silmälasien läpi. Miltä tuntuu olla keliaakikko ja mitä Keliakialiitto ja muut toimijat voisivat tehdä parantaakseen keliaakikon henkistä ja sosiaalista hyvinvointia?
    Esitys perustuu suomalaisiin kokemuksiin.
  • Kaikki, mitä keliaakikon mielessä liikkuu, ei ole näkyvillä vastaanotolla.
    Olemme teettäneet esityksessä käyttämäni sarjakuvat Suunta gluteenittoman hyvinvoinnin palveluun.
    Pohjautuvat projektin aikana kuulemiimme keliaakikoiden kokemuksiin.
    Tekijä Sarjakuva-Finlandialla palkittu sarjakuvataitelija Tiitu Takalo.
  • 5,4 miljoonaa
  • Kertoa tarinoita onnistumisista ja positiivisista kokemuksista
  • Vaikeita tunteita: pelko, ärtymys, loukkaantuminen, suru, häpeä
    Tiedollinen tuki tärkeää, mutta ei riitä
    Mitä voi syödä, mitä pitää ottaa huomioon
  • Keliaakikko = kolmen ympyrän keskellä
    Taustalla: ihmisen elämänhistoria, keliakian kanssa ja muuten
    Ympyrät: nykyelämä
    Keliakia fyysisenä sairautena, mitä voi syödä, hoito, ennuste, oireet
    Keliakia sosiaalisena kokemuksena: hoito sosiaalista, ihmisten väliset kohtaamiset, voi vaikuttaa ihmissuhteisiin
    Muu elämä: Elämä keliakian ulkopuolella, esim. perhetilanne, taloudellinen tilanne, työtilanne
    Tulossa: ennakoitu tulevaisuus: Mitä yksilö odottaa tulevaisuudeltaan? Mitä toivoo?
  • Suomen kokemuksia, perustuu niihin
  • Esim:
    Jos yksilölle on keskeistä, ettei arvostele, vaadi tai tuo itseään esille, keliakia tuo väistämättä muutoksia sosiaalisiin tilanteisiin. Tilanteet voivat tuntua hyvin kiusallisilta. Toiselle yksilölle tämä käy helposti ja luontevasti.
  • Keliakiahistoria
    Diagnoosiprosessi
  • 75 % paljon tai melko paljon tukea käytännön asioissa ja arjessa
    Tärkeää, että keliaakikolla joitain tilanteita, joissa toiset suhtautuvat ruokavaliohoitoon kannustavasti ja tukien.
    Gluteenittomuudesta huolehditaan yhdessä
  • Epävarmuus/huoli 17%
    Mieti:
    Sama kysymys ihmiselle, jolla ei ruokavalioon liittyviä erityistarpeita.
    Miten vastaukset eroaisivat?
  • Ruoka ei ole vain nälän tyydyttämistä.
    Yhdessä ruokailu on vahvasti sosiaalinen tapahtuma
  • Sosiaalisissa tilanteissa syödään usein.
    Työpaikkalounaat, pizzalle kavereiden kanssa, kakkukahvit…
    Jotta saa turvallisen ruoan, on pakko kertoa
  • Vieraille tarjotaan juuri tehtyä ruokaa.
    Tarjottu ruoka otetaan vastaan kiitollisena, ei kysellä tai kyseenalaisteta.
    Maistellaan, kehutaan, kiitellään.
    -> keliaakikko joutuu rikkomaan näitä
    Kyseenalaistamaan toisen vieraanvaraisuuden
    Esimerkiksi sinulle on leivottu kakku, mutta onko siihen käytetty korppujauhoa? Suomessa yllättävän yleinen virhe.
  • For some people it is important to be alike,
    Korostan: kaikki nämä kokemukset yksilöllisiä, kaikki keliaakikot eivät koe näin, mutta osa kokee
  • Ilo, suru, pelko, hämmennys, epätietoisuus, häpeä
    I’m not just picky. I need to be strict because of my health.
  • Mikä auttaa?
  • Mikä auttaa?
  • Suunta = direction
  • Kommentit testikäyttäjiltä
    15 000 käyntiä / visit
  • Supporting the psychological and social well being of people with coeliac disease eeva laine

    1. 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
    2. 2. Background
    3. 3. 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
    4. 4. 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
    5. 5. 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.
    6. 6. It is not just a physical condition…
    7. 7. 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
    8. 8. 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
    9. 9. 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
    10. 10. 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.
    11. 11. Coeliac disease is also a psychological and social burden
    12. 12. 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
    13. 13. 1. Each coeliac experiences coeliac disease in a distinct and individual way
    14. 14. 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
    15. 15. 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.”
    16. 16. How was the diagnosis experienced? Relief Surprise Shock Loss
    17. 17. 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?
    18. 18. 2. Support of the close ones is important
    19. 19. 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.”
    20. 20. 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.”
    21. 21. 3. Treatment causes challenges in the everyday life
    22. 22. 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
    23. 23. 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.”
    24. 24. How do you feel when eating?
    25. 25. 4. Social situations are key aspects of well-being
    26. 26. 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
    27. 27. 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?”
    28. 28. When I tell of coealic disease…
    29. 29. 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
    30. 30. 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.”
    31. 31. 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.”
    32. 32. 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”?”
    33. 33. 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
    34. 34. Supporting the coeliac
    35. 35. 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
    36. 36. Suunta – a website and workbook for gluten-free well-being
    37. 37. 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
    38. 38. 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
    39. 39. 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
    40. 40. 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
    41. 41. 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
    42. 42. Blogs • Experiences and discussion about gluten-free everyday life. • Peer support
    43. 43. 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.”
    44. 44. 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

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