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Self-care: the way to find balance in life: Development and evaluation of a self-care questionnaire for patients with inflammatory bowel disease
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Inflammatory bowel disease (IBD), ulcerative colitis (UC), and Crohn’s disease (CD) occur worldwide and are life-long chronic conditions. The symptoms, which include abdominal pain and frequent diarrhea, cause limitations in life. Thus, patients with IBD need self-care in accordance with their symptoms, their own commitment to maintaining health, and decisions on symptom management. To strengthen self-care, there is a need for a tool that assesses self-care in patients with IBD, which aims to support the patient dialogue about self-care.

The overall aim of this thesis was to develop and evaluate a questionnaire for the clinical assessment of self-care, and to explore self-care in relation to disease activity and to health-related quality of life (HRQOL) in patients with IBD.

Design and method: The thesis includes four studies, where studies I, II and IV were conducted in Sweden, and study III was conducted in the United States (U.S.). In study I, a descriptive design, interviews were conducted with twenty adult patients, in order to explore self-care in patients with IBD. In study II, the self-care questionnaire was developed and tested with 193 patients with IBD in Sweden. In study III, a crosssectional descriptive design, the self-care questionnaire was translated into English, and the responses of 67 patients in the U.S. were evaluated. Finally, in study IV, a cross-sectional exploratory design was used to explore self-care in relation to patient characteristics, disease activity, and HRQOL among 234 patients. For a total of 421 patients, the data was analyzed using content analysis, and descriptive and analytic statistics (studies I, II, III and IV).

Results: Among patients with IBD, self-care relates to symptom recognition, handling of symptoms, planning life, and seeking new options. Self-care varied according to how the patient managed daily life with regard to the symptoms of the disease (study I). Based on the results from study I, the self-care questionnaire was developed in Swedish, resulting in a valid and reliable questionnaire comprising 22 items (study II). The questionnaire was translated to English, and performed self-care activities were associated with a lower degree of well-being in relation to age and gender (study III). The patients were taking medication for IBD, paying attention to their intestinal symptoms, adapting their diet, managing their stress, planning their day and avoiding activities (studies III and IV). Self-care was more frequent in patients with CD when it came to paying attention to psychological symptoms; diet adaption; avoiding various activities including sex; and looking for new approaches to living with IBD. A greater degree of self-care activities was associated with a lower degree of HRQOL (IV).

Conclusion: The results indicate the importance of identifying the total symptom experience, and of the patient’s need to discuss self-care, in order to strengthen selfcare and achieve better treatment. The self-care questionnaire can be a useful tool to benefit the discussion of self-care for the patient, and to secure health literacy, medication adherence, and HRQOL. The valid and reliable self-care questionnaire is available for patients with IBD at gastroenterology clinics or out-patient clinics, as primary care. Disease activity affects self-care, and consequently the self-care activities.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2019. , p. 79
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1692
Keywords [en]
disease activity, inflammatory bowel disease, instrument development, health-related quality of life, questionnaire, reliability, self-care, symptoms, translation, validity, well-being
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-160081DOI: 10.3384/diss.diva-160081ISBN: 9789176850336 (print)OAI: oai:DiVA.org:liu-160081DiVA, id: diva2:1348352
Public defence
2019-10-04, Berzeliussalen, Hus 463, Campus US, Linköping, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2019-09-04 Created: 2019-09-04 Last updated: 2019-09-04Bibliographically approved
List of papers
1. Self-care among patients with Inflammatory Bowel Disease: An interview study
Open this publication in new window or tab >>Self-care among patients with Inflammatory Bowel Disease: An interview study
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2016 (English)In: Gastroenterology Nursing, ISSN 1042-895X, Vol. 39, no 2, p. 121-128Article in journal (Refereed) Published
Abstract [en]

Inflammatory bowel disease (IBD) is a chronic disease of unknown etiology. The disease occurs early in life and the burden of symptoms is significant. Patients need to perform self-care to handle their symptoms, but knowledge about what kind of self-care patients do is limited and these individuals need to learn how to manage the symptoms that arise. The aim of this study was to explore self-care among patients with IBD. Twenty adult patients with IBD, 25-66 years of age, were interviewed. Data were analyzed by performing a qualitative content analysis. Four categories with 10 subcategories emerged from the analysis of the interviews. The self-care patients perform consists of symptom recognition (subcategories: physiological sensations and psychological sensations), handling of symptoms (subcategories: adapting the diet, using medical treatment, stress management, and using complementary alternative medicine), planning life (subcategories: planning for when to do activities and when to refrain from activities), and seeking new options (subcategories: seeking knowledge and personal contacts). Self-care consists of symptom recognition, handling life through planning, and accommodating the existing situation with the ultimate goal of maintaining well-being. Being one step ahead facilitates living with IBD. A decision to actively participate in care of a chronic illness is a prerequisite for self-care. Healthcare professionals must consider patients' potential for and desire for self-care when giving advice on self-care activities. Doing so may help people better cope with IBD.

Place, publisher, year, edition, pages
Lippincott Williams & Wilkins, 2016
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-126617 (URN)10.1097/SGA.0000000000000120 (DOI)000377983500007 ()26166423 (PubMedID)
Note

Funding agencies: Medical Research Council of Southeast Sweden-FORSS; County Council of Kalmar; Florence Nightingale Foundation; Ruth and Richard Juhlins foundation

Available from: 2016-03-31 Created: 2016-03-31 Last updated: 2019-09-04Bibliographically approved
2. Development of a self-care questionnaire for clinical assessment of self-care in patients with inflammatory bowel disease: A psychometric evaluation
Open this publication in new window or tab >>Development of a self-care questionnaire for clinical assessment of self-care in patients with inflammatory bowel disease: A psychometric evaluation
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2019 (English)In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 89Article in journal (Refereed) Published
Abstract [en]

Background

Patients with inflammatory bowel disease have lifelong needs to learn how to manage their symptoms and life situation. The range of actions that patients take in order to manage daily life and maintain health is referred to as self-care. Assessment of self-care in patients with inflammatory bowel disease could allow targeted support and education by health careprofessionals. There are no existing measures assessing self-care in patients with inflammatory bowel disease.

Objectives

The aim was to develop and evaluate the self-care questionnaire for assessment of self-care among patients with inflammatory bowel disease.

Methods

Qualitative and quantitative methods were used to develop the inflammatory bowel disease self-care questionnaire. The development and evaluation process was performed in three phases: (1) item generation based on interviews with patients with inflammatory bowel disease (n = 20), (2) content validation in a panel of experts (n = 6) and patients (n = 100) assessed with the content validity index, cognitive interviews and quantifying and ranking the items to determine the usability of the questionnaire, and (3) final evaluation through a pilot study (n = 93) with test-retest evaluation (n = 50). An expert review group of three nurses and one physician continuously discussed the result during the development process.

Results

A total of 91 patients with Crohn's disease and 102 with ulcerative colitis participated. The final self-care questionnaire consists of 22 items. Assessment of content validity indicated that the items were adequate and easy to understand. Test-retest reliability was confirmed with intraclass correlations above 0.6 after a three week interval, for all items except one.

Conclusion

An inflammatory bowel disease-specific self-care questionnaire was developed using structured methods. The evaluation indicated good validity and reliability. The questionnaire may be a useful tool to assess the ability of patients with inflammatory bowel disease to perform routine self-care.

Place, publisher, year, edition, pages
Elsevier, 2019
Keywords
Content validity; Inflammatory bowel disease; Nursing; Reliability; Questionnaire development; Self-care; Swedish version
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-153966 (URN)10.1016/j.ijnurstu.2018.08.016 (DOI)000454965700001 ()30316054 (PubMedID)2-s2.0-85054459236 (Scopus ID)
Note

Funding Agencies|Medical Research Council of Southeast Sweden (FORSS) [371201, 464691, 554261, 599461]; County Council of Kalmar

Available from: 2019-01-22 Created: 2019-01-22 Last updated: 2019-09-04Bibliographically approved

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Lovén Wickman, Ulrica

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