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Coeliac disease: Women’s experiences in everyday life
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of LAH/Linnéa.ORCID iD: 0000-0002-9606-3238
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. Vol. 21, no 23-24, 3442-3450 p.
Keyword [en]
Chronic disease, illness experience, phenomenology research, nursing
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-72451DOI: 10.1111/j.1365-2702.2012.04279.xISI: 000310978000013OAI: oai:DiVA.org:liu-72451DiVA: diva2:459717
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
In thesis
1. Daily life experiences, symptoms and well being in women with coeliac disease: A patient education intervention
Open this publication in new window or tab >>Daily life experiences, symptoms and well being in women with coeliac disease: A patient education intervention
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
Chronic disease, illness experience, phenomenology, well‐being, Patient education, PBL
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-72454 (URN)978‐91‐7393‐009‐3 (ISBN)
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

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Ring Jacobsson, LisaHallert, ClaesMilberg, AnnaFriedrichsen, Maria

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Division of Health, Activity and CareFaculty of Health SciencesDepartment of Internal Medicine in NorrköpingCenter of Palliative CareDepartment of Advanced Home Care in NorrköpingDepartment of LAH/Linnéa
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