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What do patients need to know? Living with inflammatory bowel disease
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.ORCID iD: 0000-0002-9786-7326
Linköping University, Department of Clinical and Experimental Medicine, Division of Inflammation Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Center, Department of Gastroentorology.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
2014 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 11-12, 1718-1725 p.Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: To explore the need for knowledge as expressed by patients diagnosed with inflammatory bowel disease.

BACKGROUND: Inflammatory bowel disease has a major impact on physical and emotional well-being, placing considerable demands on patients' management of daily activities. Although inflammatory bowel disease patients' level of knowledge about their disease has been previously studied, it is necessary to learn more about their self-expressed needs.

DESIGN: The study was designed to explore patients' need for knowledge; therefore, an inductive method was chosen.

METHODS: Thirty patients with inflammatory bowel disease were interviewed. Content analysis was used to describe their need for knowledge.

RESULTS: The analysis generated three categories and eight subcategories: (1) knowledge related to the course of the disease (subcategories: understanding causal relationships between symptoms and the disease, complications related to the disease and understanding treatment), (2) knowledge related to managing everyday life (subcategories: behaviour that enhances well-being and managing social life) and (3) difficulty understanding and assimilating information (subcategories: shifting knowledge needs, help to understand information and reasons for wanting or not wanting knowledge).

CONCLUSION: Knowledge needs were related to what to expect when living with inflammatory bowel disease in order to manage everyday life. There was a great variation in the need for knowledge, which was greatest immediately following diagnosis and during relapse.

RELEVANCE TO CLINICAL PRACTICE: It is important for healthcare providers to ascertain the patients' individual knowledge needs and together with them formulate an individual care plan that gives the patient the necessary knowledge to manage their health and social life.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2014. Vol. 23, no 11-12, 1718-1725 p.
Keyword [en]
content analysis, Crohn's disease, knowledge need and ulcerative colitis
National Category
Gastroenterology and Hepatology
Identifiers
URN: urn:nbn:se:liu:diva-97578DOI: 10.1111/jocn.12321ISI: 000335443800027PubMedID: 24004406OAI: oai:DiVA.org:liu-97578DiVA: diva2:648954
Available from: 2013-09-17 Created: 2013-09-17 Last updated: 2017-12-06
In thesis
1. Life situation among persons living with inflammatory bowel disease.
Open this publication in new window or tab >>Life situation among persons living with inflammatory bowel disease.
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Living with inflammatory bowel disease (IBD) affects physical, psychological and social dimensions, limiting the ability to engage in daily activities. Persons with IBD may need frequent and lifelong contacts with the healthcare (HC), highlighting the importance of quality care. High quality HC for persons with IBD involves a partnership between the HC professionals and the person living with the disease. Information is essential, the more a person knows about their disease, the more concordant and satisfied with their treatment they are likely to be.

The overall aim of this thesis was to describe the knowledge need, life situation and perception of HC among persons living with IBD, in order to develop a questionnaire to evaluate the quality of HC.

This thesis is based on three studies that are presented in four papers. Qualitative methods were used to describe aspects of life situation in relation to the disease, whereas quantitative method was used to develop a questionnaire measuring quality of care. Study I and II have an inductive qualitative design. In study I, qualitative interviews with 30 people were performed to describe the knowledge need and experience of critical incidents in daily life while living with IBD. The interviews in study I were analyzed using content analysis (results presented in Paper I) and critical incident technique (results presented in Paper II). In study II, the perceptions of HC among persons living with IBD was explored in five focus group interviews and two individual interviews, in total n=26. Study III aimed to develop and evaluate a questionnaire, measuring quality of care among persons with IBD, including 318 persons with IBD and 8 professionals. The knowledge need among persons with IBD focused on managing symptoms and course of the disease and learning to assimilate the information in order to manage everyday life. Losing bowel control was of great concern for most of the informants in the study. Many of the informants said that “the bowel ruled their life” and that it influenced them to a great extent in their daily lives. The perception of HC among persons with IBD meant being met with respect and mutual trust, receiving information at the right time, shared decision-making, competence and communication, access to care, accommodation, continuity of care and the pros and cons of specialized care. The quality of care questionnaire QoC-IBD was constructed in five dimensions, building on the results from Study I and II. The dimensions were trust and respect, decision-making, information, continuity of care and access to care consisting of 21 questions in total. QoC-IBD is a short, self-administrated questionnaire that measures experiences of healthcare among persons with IBD with promising validity and reliability.

To improve quality of care, HC is recommended to consider individual care needs and take the person’s daily life and social context into account. The QoC-IBD questionnaire measures the subjective experience of quality of care. Further testing in clinical practice is necessary to evaluate if QoC-IBD can be used to evaluate the care given and areas of improvement in HC for persons living with IBD.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2017. 61 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1593
Keyword
critical incident, Crohn’s disease, inflammatory bowel disease, knowledge need, life situation, perception of healthcare, quality of care, ulcerative colitis
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-142720 (URN)10.3384/diss.diva-142720 (DOI)9789176854358 (ISBN)
Public defence
2017-12-08, Berzeliussalen, Campus US, Linköping, 09:00 (English)
Opponent
Supervisors
Available from: 2017-11-01 Created: 2017-11-01 Last updated: 2017-11-01Bibliographically approved

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Pihl Lesnovska, KatarinaBörjeson, SussanneHjortswang, HenrikHollman Frisman, Gunilla

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Pihl Lesnovska, KatarinaBörjeson, SussanneHjortswang, HenrikHollman Frisman, Gunilla
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