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Gaining perspective on own illness - The lived experiences of a patient education program for women with treated coeliac disease.
Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. (chronic disease management)
Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, 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. (Chronic disease management)
Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. (MIgration och Hälsa)
Linköping University, Faculty of Medicine and Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. (Chronic disease management)ORCID iD: 0000-0002-9606-3238
2016 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 9-10, p. 1229-1237Article 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. Vol. 25, no 9-10, p. 1229-1237
Keywords [en]
Chronic disease ;coeliac disease;nursing;patient education;phenomenology;women′s health
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-123585DOI: 10.1111/jocn.13123ISI: 000374506500006PubMedID: 26814834OAI: oai:DiVA.org:liu-123585DiVA, id: diva2:889986
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: 2019-11-15Bibliographically approved
In thesis
1. Perspectives on living with coeliac disease in remission: Daily life experiences, symptoms and well-being
Open this publication in new window or tab >>Perspectives on living with coeliac disease in remission: Daily life experiences, symptoms and well-being
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. p. 104
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1474
Keywords
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:nbn:se:liu:diva-122382 (URN)10.3384/diss.diva-122382 (DOI)978-91-7685-975-9 (ISBN)
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: 2019-11-15Bibliographically approved

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Ring Jacobsson, LisaMilberg, AnnaHjelm, KatarinaFriedrichsen, Maria

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