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Daily life experiences, symptoms and well being in women with coeliac disease: A patient education intervention
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
2011 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

Background and aims: Despite living with a gluten-free diet (GFD) Swedish women with coeliac disease (CD) report a lower level of well-being than women without the disease and than men with the disease. The aims of this thesis were to describe the life experience of being a woman living with CD (I) and to assess the effects of patient education (PE) with problem based learning (PBL) on psychological well-being (II) and gastrointestinal symptoms (III).

Subjects and methods: In total 106 women, > 20 years, with confirmed CD, who had been treated with a GFD for a minimum of five years were randomized (II&III) to one of two groups: either to the intervention group (n=54) that underwent a ten-session educational program, called ‘Coeliac School’, with PBL, or to a control group (n=52) that received information regarding CD, which was sent to their home on a regular basis.

Assessments: Well-being (II & III) (the Psychological General Well-Being index and the Gastrointestinal Symptom Rating Scale) was assessed at baseline and after 10 weeks in all patients and after 6 months in the intervention group. Individual interviews (I) were carried out with purposefully selected women (n=15) before the start of the‘Coeliac School’.

Result: The qualitative study showed that CD can influence women’s lives in different ways. A desire for a normalised life-world was described. Three conditions necessary to achieve a normalised life-world were described as: being secure, being in control and being seen and included. After ten weeks of education, participants in the “Coeliac school” reported a significant improvement in psychological well-being (p=0.001) and gastrointestinal symptoms (p=0.013). The controls did not improve significantly. However, at baseline the controls, for reasons which were not apparent, and despite randomization, expressed significantly better psychological well-being and fewer gastrointestinal symptoms than women in the intervention group. Six months after completion of the PE program some of its positive effect had decreased.

Conclusions: A PE with PBL can help women with CD to benefit from a greater degree of well-being. It is important to offer PE to those women who fail to achieve a normalised lifeworld. However, intervention methods need to be refined in order to provide a more pronounced long-term effect.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2011. , 47 p.
Series
Linköping Studies in Health Sciences. Thesis, ISSN 1100-6013 ; 119
Keyword [en]
Chronic disease, illness experience, phenomenology, well‐being, Patient education, PBL
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-72454ISBN: 978‐91‐7393‐009‐3 OAI: oai:DiVA.org:liu-72454DiVA: diva2:459733
Presentation
2011-12-06, K52, Kåkenhus, Campus Norrköping, Linköpings universitet, Norrköping, 13:00 (English)
Supervisors
Available from: 2011-11-28 Created: 2011-11-28 Last updated: 2015-06-10Bibliographically approved
List of papers
1. Coeliac disease: Women’s experiences in everyday life
Open this publication in new window or tab >>Coeliac disease: Women’s experiences in everyday life
2012 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 23-24, 3442-3450 p.Article in journal (Refereed) Published
Abstract [en]

Aim. This paper is a report of a descriptive study on what life is like as a woman living with coeliac disease (CD).

Background. The therapy for CD is a gluten-free diet (GFD), and if sufferers keep strictly to this it is suggested that they will stay well. However, previous studies point out that people who are treated for CD, particularly women, experience various kinds of inconvenience in relation to having CD and to being treated with GFD.

Methods. A phenomenological approach as devised by Giorgi was used. Taperecorded qualitative interviews with a total of 15 women who were being treated for CD were conducted in 2008 in Sweden.

Results. The results demonstrated that CD can influence women’s lives in different ways. The general structure of being a woman with coeliac disease was described as a striving towards a normalised lifeworld. Three  conditions necessary to achieve a normalised life were described, namely being secure, being in control and being seen and included.

Conclusion. The results of this study can help caregivers, and others, to understand and develop support for women with this condition.

Place, publisher, year, edition, pages
Blackwell Publishing, 2012
Keyword
Chronic disease, illness experience, phenomenology research, nursing
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-72451 (URN)10.1111/j.1365-2702.2012.04279.x (DOI)000310978000013 ()
Note

funding agencies|Medical Research Council of Southeast Sweden FORSS||Ostergotland County Council||

Available from: 2011-11-28 Created: 2011-11-28 Last updated: 2017-12-08
2. Does a Coeliac School increase psychological well-being in women suffering from coeliac disease, living on a gluten-free diet?
Open this publication in new window or tab >>Does a Coeliac School increase psychological well-being in women suffering from coeliac disease, living on a gluten-free diet?
2012 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 5-6, 766-775 p.Article in journal (Refereed) Published
Abstract [en]

Aim and objective.  To assess the effects of an active method of patient education on the psychological well-being of women with coeliac disease in remission.

Background.  Despite remission with a gluten-free diet, adults with coeliac disease and especially women experience a subjective poor health. Self-management education seems to be promising tool to help patients suffering from coeliac disease to cope with their disorder.

Design.  A randomised controlled trial. Methods.  A total of 106 women, ≥20 years, with confirmed coeliac disease, who had been on a gluten-free diet for a minimum of five years. The intervention group (n = 54) underwent a 10-session educational programme, 'Coeliac School', based on problem-based learning. The controls (n = 52) received information regarding coeliac disease sent home on a regular basis. The primary outcomes were psychological general well-being measured with a validated questionnaire.

Results.  Participants in the Coeliac School reported a significant improvement in psychological well-being at 10 weeks, whereas the controls given usual care reported a worsening in psychological well-being. After six months, a significant improvement remained for the index of vitality.

Conclusions.  Patient education increased psychological well-being in women with coeliac disease. There is a need to refine the methods of patient education to make the effects of well-being more pronounced over time.

Relevance to clinical practice. Patient education using problem-based learning promotes self-management in coeliac disease by improving the well-being of patients who have been struggling with the gluten-free diet for years.

Place, publisher, year, edition, pages
Blackwell Publishing, 2012
Keyword
Disease, Coeliac School, gluten-free diet, patient education, problem-based learning, randomised controlled trial
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-72452 (URN)10.1111/j.1365-2702.2011.03953.x (DOI)000300504000019 ()22039932 (PubMedID)
Available from: 2011-11-28 Created: 2011-11-28 Last updated: 2017-12-08Bibliographically approved
3. Impact of an Active Patient Education Programme on GastrointestinalSymptoms in Women with Celiac Disease Following a Gluten-free Diet: Randomized Controlled Trial
Open this publication in new window or tab >>Impact of an Active Patient Education Programme on GastrointestinalSymptoms in Women with Celiac Disease Following a Gluten-free Diet: Randomized Controlled Trial
2012 (English)In: Gastroenterology Nursing, ISSN 1042-895X, E-ISSN 1538-9766, Vol. 35, no 3, 200-206 p.Article in journal (Refereed) Published
Abstract [en]

Despite living with a gluten-free diet Swedish women with celiac disease report a higher rate of gastrointestinal symptoms than women without the disease. This study was designed to assess the impact of active patient education on gastrointestinal symptoms in women with a gluten-free diet. A total of 106 Swedish women, > 20 years, with celiac disease on a gluten free diet for minimum five years took part in a randomized, controlled trial. The intervention group (n=54) underwent a ten-session educational program “Celiac School”, based on problem-based learning. Controls (n=52) were sent information regarding celiac disease at home. Outcome measure was gastrointestinal symptoms at ten weeks and six months after intervention, assessed with the Gastrointestinal Symptom Rating Scale. After ten weeks “Celiac school” (p=0.013) the participating women reported significant improvements that remained six months later (p=0.029). The controls did not improve significantly. A comparison of the development of scores, from baseline to 10 weeks, could not demonstrate a significant difference in the overall index between the two groups but showed a significant improvement concerning one of its components, namely the index reflecting Abdominal Pain (p= 0.007). Intervention methods should be refined in order to reach an even more pronounced effect.

Place, publisher, year, edition, pages
United States: Lippincott Williams & Wilkins, 2012
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-72453 (URN)10.1097/SGA.0b013e318255fe3a (DOI)000304758000005 ()
Note

On the day of the defence day the status of this article was: Manuscript

Available from: 2011-11-28 Created: 2011-11-28 Last updated: 2017-12-08Bibliographically approved

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