Self-care: the way to find balance in life : development and evaluation of a self-care questionnaire for patients with inflammatory bowel disease

Abstract: 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.

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