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Perspectives on living with coeliac disease in remission: Daily life experiences, symptoms and well-being
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
2015 (English)Doctoral 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 men with the disease. The all-embracing aim of the thesis was to study experiences of living with coeliac disease in remission and to discover whether a patient education intervention can influence the perceived health and daily life of women with coeliac disease.

Methods: Studies I-IV were based on the same sample, a total population of 106 women, > 20 years old, with confirmed CD, who had been treated with a GFD for a minimum of five years. From the total population of 106, 15 and 14 purposefully selected women were included in studies I and IV respectively, which had a phenomenological approach by which data was collected through recorded personal narrative interviews. The participants in studies II & III, comprising the total sample of 106 women, were randomized to one of two groups: either to the intervention group (n=54) that underwent a ten-session patient education (PE) program with problem based learning (PBL), or to a control group (n=52) that received information regarding CD, which was sent to their home on a regular basis. Data was collected by self-administered questionnaires. Study V included 22 purposefully selected people (11 women and 11 men) with confirmed CD that had experienced any kind of residual discomfort despite treatment for at least five years with a GFD. Data was collected by recorded semistructured interviews.

Well-being (II-III) was assessed at baseline and after 10 weeks in all patients and after six months in the intervention group using the Psychological General Well-Being index and the Gastrointestinal Symptom Rating Scale. The interviews (I & IV), which were carried out before the start of the PE (I) and within two weeks of completion of the PE program and about three months after the first interview (IV), were analysed with descriptive phenomenology. The data from study V was analysed by content analysis.

Results: In the results, the experience of living with CD in remission was described by participants as a constant quest for a normal life (I, V). Three constituents representing conditions necessary to achieve a normalised lifeworld were described (I) as: being secure, being in control, and being seen and included. The balance of thoughts in relation to these constituents proved to be crucial for the individual woman’s ability to experience a normal life, despite the disease. Participants described (V) conditions facilitating the opportunities to live a normal life, but also various barriers to reaching this goal.

The results from the PE based on PBL (II-III) showed that the PE improved psychological well-being (II) and GI (III) in women with CD to some extent, but not sufficiently as the improvement reached normative values for women only at 10 weeks regarding PGWB mean total index, and at no point in time regarding GSRS mean total index. The effect had waned at the follow-up six months after the intervention was completed as regards the women’s psychological well-being. In coping with CD, it seems essential for women to interact with others with the same disease (IV). The interaction made women feel individually strengthened, and provided them with a broader perspective on life with CD. As a result, this strengthened their sense of self in relation to the disease. Knowledge given by other participants and experts could result in both relief and anxiety.

The results from the PE based on PBL (II-III) showed that the PE improved psychological well-being (II) and GI (III) in women with CD to some extent, but not sufficiently as the improvement reached normative values for women only at 10 weeks regarding PGWB mean total index, and at no point in time regarding GSRS mean total index. The effect had waned at the follow-up six months after the intervention was completed as regards the women’s psychological well-being. In coping with CD, it seems essential for women to interact with others with the same disease (IV). The interaction made women feel individually strengthened, and provided them with a broader perspective on life with CD. As a result, this strengthened their sense of self in relation to the disease. Knowledge given by other participants and experts could result in both relief and anxiety.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2015. , 104 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1474
Keyword [en]
Chronic disease, illness experience, patient education, PBL, phenomenology, residual discomfort, well-being.
National Category
Clinical Medicine Gastroenterology and Hepatology Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:liu:diva-122382DOI: 10.3384/diss.diva-122382ISBN: 978-91-7685-975-9 (print)OAI: oai:DiVA.org:liu-122382DiVA: diva2:866026
Public defence
2015-11-27, K3, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-10-30 Created: 2015-10-30 Last updated: 2016-03-24Bibliographically 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
4. Gaining perspective on own illness - The lived experiences of a patient education program for women with treated coeliac disease.
Open this publication in new window or tab >>Gaining perspective on own illness - The lived experiences of a patient education program for women with treated coeliac disease.
2016 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 9-10, 1229-1237 p.Article in journal (Refereed) Published
Abstract [en]

Aims and Objectives

To explore the lived experiences of women with coeliac disease after attending a patient education programme, to gain a broader perspective of its influence.

Background

Adults, particularly women, with coeliac disease report suffering from poor well-being and reduced quality of life in terms of health. Patient education programmes might support and encourage them in the search for possible improvements in lifestyle and in their approach to the disease.

Design

A qualitative phenomenological study.

Methods

Personal narrative interviews with 14 women suffering from coeliac disease who had participated in an educational programme. Data analysis in accordance with Giorgi was performed.

Results

The essential structure of women's lived experiences following their participation in the patient education programme was found to be an interaction with others with the same disease, which left the women feeling individually strengthened. The interaction enabled the participants to acquire a broader view of their life with coeliac disease. As a result, this realigned their sense of self in relation to their own disease.

Conclusion

In coping with coeliac disease, it seems that women need interaction with others with the disease to experience togetherness within a group, get the opportunity to compare themselves with others and to exchange knowledge. The interaction appears to result in that women acquire an overview of life with the disease, develop a greater confidence and dare to try new things in life.

Relevance to clinical practice

When designing a patient education programme it seems important to consider the needs of persons to meet others with the same disease, and to ask them about their need for knowledge, rather than simply assuming that health care professionals know what they need.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2016
Keyword
Chronic disease ;coeliac disease;nursing;patient education;phenomenology;women′s health
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-123585 (URN)10.1111/jocn.13123 (DOI)000374506500006 ()26814834 (PubMedID)
Note

At the time of the thesis presentation was the publication in the status Manuscript

Available from: 2015-12-29 Created: 2015-12-29 Last updated: 2017-04-21Bibliographically approved
5. Experiences, Own Management and Beliefs regarding Residual Symptoms among People with Coeliac Disease
Open this publication in new window or tab >>Experiences, Own Management and Beliefs regarding Residual Symptoms among People with Coeliac Disease
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective: To explore experiences and beliefs concerning residual symptoms despite a gluten-free diet in women and men with coeliac disease, with a focus on causes and management.

Background: Between 7% and 30% of people with coeliac disease suffer from residual symptoms, despite following a long-term gluten-free diet, and it has been proposed that women in particular, continue to experience such inconveniences. There is a lack of knowledge about own beliefs concerning the underlying causes of persistent symptoms among people with coeliac disease and their own management of these symptoms.

Methods: A qualitative explorative design with semi-structured interviews with 22 adults, 11 females and 11 males, with coeliac disease in Sweden. Data were analyzed using qualitative content analysis.

Results: The disease was continuing to have a substantial impact on the informants’ lives even after several years’ treatment. The interviews revealed residual symptoms of both a gastrointestinal and extra-intestinal nature, which were considered to influence their personality. The management of persistent symptoms resembled thorough detective work, and both efforts to find the missing puzzle piece and strategies to prevent problems were used. Beliefs about the underlying causes of these symptoms were bodily convictions and that it was impossible to live completely gluten-free.

Conclusion: People with treated coeliac disease, irrespective of gender, may experience residual symptoms of both a physical and psychological nature, causing major negative impacts on their lives in different ways. In the light of this, healthcare staff should change their practices regarding the follow-up of these people, and in addition to medical care should  provide guidance on management strategies to facilitate the daily life of these people. Furthermore, information to people who have just been diagnosed should make them aware of the possibility that they may come to experience continued symptoms, despite treatment.

Keyword
Coeliac disease, chronic disease, content analysis, symptom experiences
National Category
Gastroenterology and Hepatology Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-122380 (URN)
Available from: 2015-10-30 Created: 2015-10-30 Last updated: 2016-03-24Bibliographically approved

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