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Critical situations in daily life as experienced by patients with inflammatory bowel disease
Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Gastroentorology. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Department of Anaesthesiology and Intensive Care in Norrköping.
Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Region Östergötland, Heart and Medicine Center, Department of Gastroentorology.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.ORCID iD: 0000-0002-9786-7326
2016 (English)In: Gastroenterology Nursing, ISSN 1042-895X, Vol. 39, no 3, 195-203 p.Article in journal (Refereed) Published
Abstract [en]

Crohn disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic and have a fluctuating clinical course that impacts daily life. Daily life with a chronic disease involves thinking and worrying about the limitations that chronic disease causes. Knowledge about how patients who suffer from IBD manage critical incidents in daily life is lacking. The aim of the study was to describe how patients living with IBD experience critical incidents in daily life in relation to their disease and symptoms. Thirty adult patients were interviewed focusing on critical incidents in daily life. Data were analyzed using the critical incident technique. The study comprised 224 critical incidents and was grouped into 21 subcategories and 5 categories: losing bowel control, having a body that smells, being unable to meet own and others' expectations, not being believed or seen, and experiencing frustration due to side effects and ineffective treatment. These categories formed one main area describing the overall result "The bowels rule life." The uncertain nature of IBD created critical incidents in which the bowel ruled life, causing patients to avoid social interaction. It also placed considerable demands on the family and sometimes had a negative effect on the afflicted person's career.This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially.

Place, publisher, year, edition, pages
Lippincott Williams & Wilkins, 2016. Vol. 39, no 3, 195-203 p.
National Category
Gastroenterology and Hepatology
Identifiers
URN: urn:nbn:se:liu:diva-126621DOI: 10.1097/SGA.0000000000000211ISI: 000380804500004PubMedID: 26870902OAI: oai:DiVA.org:liu-126621DiVA: diva2:915923
Note

Funding agencies: We acknowledge funding from the County Council of Ostergotland.

Available from: 2016-03-31 Created: 2016-03-31 Last updated: 2017-11-01Bibliographically approved
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, KatarinaHollman Frisman, GunillaHjortswang, HenrikBörjeson, Sussanne

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Pihl Lesnovska, KatarinaHollman Frisman, GunillaHjortswang, HenrikBörjeson, Sussanne
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Faculty of Medicine and Health SciencesDepartment of GastroentorologyDivision of Nursing ScienceDepartment of Anaesthesiology and Intensive Care in NorrköpingDivision of Neuro and Inflammation ScienceDepartment of Oncology
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