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The Worried well: Women living with Coeliac disease in Sweden
Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Health, Activity, Care.
Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Department of Internal Medicine VHN.
Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in the West of Östergötland, Unit of Research and Development in Local Health Care, County of Östergötland.
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Aims and objectives: To explore how women with coeliac disease (CD) experience everyday life and their outlook on their future.

Background: Women who are diagnosed with CD and who are recommended to eat a gluten-free diet for life is likely to undergo a transition. It is therefore important that health professionals have insight into what it is like to live with a chronic illness and the factors that affect the lives of women who have CD.

Design: A qualitative approach with interviews was used. The inclusion criteria were: woman aged 20 years or more, CD diagnosed at least 2 years prior to inclusion, following a gluten-free diet and speaking Swedish fluently.

Method: A conventional content analysis was used for the subjective interpretation of the data content.

Results: Three main themes emerged in the analysis: illness trajectory and treatment, socializing with others and feelings of loneliness and worries. The findings indicate that living with CD affects the person’s entire life from the past, in the present, and into the future, especially when daily routines must be altered.

Conclusions: The women expressed a sense of loneliness and invisibility and are constantly worried about their health, which extended to the management of their diet when socializing with others. The diet is viewed as a friend, an enemy, an obstacle and an opportunity to enjoy a good life.

Relevance to clinical practice: Supporting women diagnosed with CD as adults during successful adaptation to their chronic illness appears to be a major task for health care professionals. Health care needs to address these women’s symptoms, worries and sense of invisibility.

Keyword [en]
coeliac disease, gluten-free diet, self-management, transition, women
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-71897OAI: oai:DiVA.org:liu-71897DiVA: diva2:455244
Available from: 2011-11-09 Created: 2011-11-09 Last updated: 2012-02-29Bibliographically approved
In thesis
1. Living with coeliac disease beyond the diagnosis
Open this publication in new window or tab >>Living with coeliac disease beyond the diagnosis
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Studies show that women living in Sweden treated for coeliac disease have lower subjective health than other women. After showing signs of remission, adults who have coeliac disease and follow a gluten-free diet, are expected to handle the treatment without any further planned follow-up by health care.

Aim: The overall aim of this thesis was to study aspects of living with coeliac disease in adults in the years beyond the diagnosis.

Methods: Quantitative methods were used in Studies I, II and III. A qualitative content analysis was performed in Study IV.

Results: The results show that women with coeliac disease have a lower level of well-being than men with coeliac disease. The women who have coeliac disease reported a high rate of gastrointestinal symptoms, although they followed a gluten-free diet, and they visited health care services more frequently than women who did not have coeliac disease. A low rate of gastrointestinal symptoms, a positive self-image and few comorbidity emerged as factors that positively affected well-being. Worries also seemed to be a companion of women diagnosed with coeliac disease in adulthood, typically evident when socializing with others.

Conclusion: This thesis may provide evidence questioning the validity of declaring all women with coeliac disease showing a normalized intestinal mucosa to be in remission, and thus leaving them to self-management.

Clinical implications: Health care professionals need to be aware of that the transition to a gluten-free life may vary for individuals. It does not seem enough to follow a gluten-free diet to reach a state of good well-being for all women. A major task for health care providers is therefore to support women with CD in reaching better subjective treatment outcomes. The results may also contribute to that health care system develops routines in order to optimise the care and treatment of these patients.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2011. 85 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1278
Keyword
Chronic illness, Coeliac disease, Comorbidity, Gastrointestinal complaints, Health care use, Self-image, Well-being
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-71898 (URN)978-91-7393-019-2 (ISBN)
Public defence
2011-12-08, Aulan K1, Kåkenhus, Campus Norrköping, Linköpings universitet, Norrköping, 13:00 (English)
Opponent
Supervisors
Available from: 2011-11-09 Created: 2011-11-09 Last updated: 2011-12-12Bibliographically approved

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Roos, SusanneHellström, IngridHallert, ClaesWilhelmsson, Susan

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Health, Activity, CareFaculty of Health SciencesDepartment of Internal Medicine VHNDepartment of Medical and Health SciencesUnit of Research and Development in Local Health Care, County of Östergötland
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