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- Lovén Wickman, Ulrica, 1966-, et al.
(författare)
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Development of a self-care questionnaire for clinical assessment in patients with inflammatory bowel disease
- 2018
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Ingår i: Presented at the 13th Congress of ECCO, Vienna, Austria, February 14-17, 2018.
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Konferensbidrag (refereegranskat)abstract
- BACKGROUNDPatients with inflammatory bowel disease (IBD) 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 defined as self-care. Assessment of self-care may facilitate patient consulting in IBD health care, with the intention to support and strengthen individual efforts to improve their self-care. There is a lack of measures to assess self-care in patients with IBD. The aim of this study was to develop and evaluate the IBD Self-Care questionnaire for assessment of self-care among patients with IBD.METHODSQualitative and quantitative methods were used to develop the IBD self-care questionnaire. The development and evaluation process was performed in three-phases; (1) item generation based on an interview study on self-care in patients with IBD (n = 20), (2) content validation assessed with Content Validity Index (CVI) by an expert panel (n = 6) and patients (n = 100), ranking and selection of the items, and cognitive interviews to determine the usability of the questionnaire and (3) final evaluation through a pilot study (n = 93) and a test–retest (n = 50) after three weeks. An expert review group with three nurses and one physician continuously discussed the result during the development process.RESULTSA total of 91 patients with Crohn's disease and 102 with ulcerative colitis participated. The final IBD Self-Care questionnaire consisted of 22 items. The assessment of content validity indicated that the items were adequate and easy to understand. Reliability was confirmed with a conformity of 75–100%, in test–retest statistics.CONCLUSIONAn IBD-specific self-care questionnaire was developed with structured methods. The evaluation indicated good validity and reliability. The questionnaire may be a useful tool to assess patients’ with IBD ability of self-care in daily practice. However, the results need to be confirmed in further evaluations of larger IBD populations.
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| 2. |
- Lovén Wickman, Ulrica, 1966-, et al.
(författare)
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Development of a self-care questionnaire for clinical assessment of self-care in patients with inflammatory bowel disease : A psychometric evaluation.
- 2019
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Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 89, s. 1-7
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Tidskriftsartikel (refereegranskat)abstract
- 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 care professionals. 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.
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| 3. |
- Lovén Wickman, Ulrica, 1966-, et al.
(författare)
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Self-care among patients with inflammatory bowel disease - an interview study
- 2014
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Ingår i: Presented at the 9th Congress of ECCO: Inflammatory Bowel Diseases, Copenhagen, Denmark, February 20-22, 2014.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background Inflammatory bowel disease (IBD) is a chronic inflammatory bowel disease of unknown etiology. The disease occurs early in life and the burden of symptoms is the main problem. Patients need to perform self-care to handle their symptoms but knowledge about what kind of self-care patients do is limited and these typically young individuals need to learn how to manage the symptoms that arise.Methods Twenty adult patients with IBD, 26-66 years of age were interviewed. A qualitative content analysis was performed.Results Four categories with ten sub-categories emerged from the analyses of the interviews. The self-care patients perform consist of symptom recognition (subcategories: physiological sensations and psychological sensations), handling of symptoms (subcategories: adapting the diet, using medical treatment, stress management and using complementary or 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).Conclusions Patients with IBD manage their lives through a broad range of self-care activities. Self-care consists of recognition, handling, planning and seeking new options to increase personal well-being. Being one step ahead facilitates the ability to live a full life. Key words: content analysis, crohns disease, inflammatory bowel disease, self-care, ulcerative colitis.
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| 4. |
- Lovén Wickman, Ulrica, 1966-, et al.
(författare)
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Self-care, disease activity and health-related quality of life among patients with inflammatory bowel disease
- 2020
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Ingår i: Archives of Clinical and Biomedical Research. - : Fortune Journals. - 2572-5017. ; 4:6, s. 674-690
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Self-care is needed for patients living with inflammatory bowel disease so that they can manage symptoms in the context of activities of daily living. The objective was to explore self-care in relation to disease activity and health-related quality of life in patients with inflammatory bowel disease.Methods: We used a cross-sectional exploratory design and a total of 234 patients with inflammatory bowel disease participated. Disease specific measurements was used as, a newly developed self-care questionnaire, Harvey Bradshaw Index, the Simple Clinical Colitis Activity Index and Short Health Scale.Results: The results revealed that patients reported a high frequency of self-care maintenance as medication adherence, diet adaptation, planning the day and avoiding activities, self-care monitoring in symptom recognition and self-care management in managing stress and managing sleep. Higher disease activity was related to higher self-care activity. Compared to patients with ulcerative colitis, those with Crohn’s disease planned their day to a higher degree when their bowel symptoms interfered with daily life. Disease activity and avoiding activities decreased their health-related quality of life.Conclusion: Self-care was positively associated to higher disease activity. Higher disease activity highlight self-care maintenance as planning the day and avoiding activities in daily life what in turn decrease health-related quality of life. Regular discussions on symptoms in relation to self-care is of great importance for patients to adjust their daily activities.
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| 6. |
- Lovén Wickman, Ulrica, 1966-
(författare)
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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
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)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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| 8. |
- Johansson, Ellen, 1991-, et al.
(författare)
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Medication adherence in relation to Health-related Quality of Life in patients with Inflammatory Bowel Disease – A cross-sectional study
- 2022
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Konferensbidrag (refereegranskat)abstract
- BackgroundInflammatory Bowel Diseases are chronic diseases often with complex treatment. The treatment is lifelong and complex and may include several different pharmaceutical groups and sometimes surgery. Not rarely is treatment resistance developed and the treatment may come with different degrees of side effects. Earlier research has shown insufficient to medication adherence and a lower degree of health-related quality of life in patients with inflammatory bowel disease.The aim is to describe the relationship between medication adherence and health-related quality of life in a Swedish population diagnosed with inflammatory bowel disease. Additional research questions are if any risk factors of low medication adherence can be identified from the collected variables.MethodsThis cross-sectional study included N=206 patients from three different regions in Sweden. The questionnaires MMAS-8 and Short Health Scale were used combined with a questionnaire regarding patient characteristics. The data and patient characteristics were described and analyzed using descriptive statistics.Ethical approval has been received from the Regional Ethical Review Board, Linköping, Sweden (no.: 2015/369-31).ResultsThe majority of patients had Ulcerative Colitis (62.6%) There were no significant differences between the different groups of Inflammatory Bowel Disease regarding patient characteristics apart from having gone through surgical procedures, which were more common in patients with Crohn’s disease. A small correlation was shown between medication adherence and the health-related quality of life dimension social function (rho = -0.146; p <0.05). Medication adherence showed no significant correlations to the remaining health-related quality of life dimensions: disease related worry, symptom burden and sense of general well-being. Possible risk factors identified for low medication adherence were age between 30 and 50, working at high occupational level, and higher educational level.ConclusionThe complexity of measuring medication adherence has been established, making it difficult to make any certain conclusions regarding the hypothesis in this report. This study showed no clear association between medication adherence and health-related quality of life in patients with inflammatory bowel disease. However, it visualized the need of optimizing the instruments used to measure medication adherence in individuals with a non-conventional treatment plan
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| 10. |
- Lovén Wickman, Ulrica, 1966-, et al.
(författare)
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Experiences of primary care among young adults with mental illness – A systematic literature review
- 2023
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Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 37:3, s. 628-641
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Tidskriftsartikel (refereegranskat)abstract
- Background: Mental illness, such as depression, anxiety disorders, attention deficit hyperactivity disorder and different addictive diseases, has increased among young adults over the last decade. Mental illness is associated with distress and problems functioning in social activities. Healthcare centres, that is, primary care, serve as the first point of contact with healthcare professionals for those young adults and provide outpatient medical and nursing care covering both physical and mental illness. Objective: To explore experiences of primary care among young adults with mental illness. Methods: A systematic literature review was conducted that followed the method of Bettany–Saltikov and McSherry. A keyword search was performed in various databases, and after a quality assessment 23 articles were included in the review. Results: Young adults' experiences from primary care are described in four categories – Facing difficulties to accept help, relational preconditions, structural and organisational hindrances and satisfaction with youth-focused mental health interventions. Young adults with mental illness experience many difficulties in accessing and receiving proper help from primary care. Further, they did not believe in recovery from mental illness, and they also expressed a lack of mental health literacy. Conclusion: While being the first contact with healthcare professionals, primary care needs to adjust its services to address the growing group of young adults suffering from mental illness. It is necessary to provide tailored guidelines and interventions in primary care for young adults with mental illness, and the Tidal Model may improve the contacts with young adults in primary care.
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