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Life situation among persons living with inflammatory bowel disease.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Gastroentorology.
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 [en]
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: urn:nbn:se:liu:diva-142720DOI: 10.3384/diss.diva-142720ISBN: 9789176854358 (print)OAI: oai:DiVA.org:liu-142720DiVA: diva2:1154004
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
List of papers
1. What do patients need to know? Living with inflammatory bowel disease
Open this publication in new window or tab >>What do patients need to know? Living with inflammatory bowel disease
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
Keyword
content analysis, Crohn's disease, knowledge need and ulcerative colitis
National Category
Gastroenterology and Hepatology
Identifiers
urn:nbn:se:liu:diva-97578 (URN)10.1111/jocn.12321 (DOI)000335443800027 ()24004406 (PubMedID)
Available from: 2013-09-17 Created: 2013-09-17 Last updated: 2017-11-01
2. Critical situations in daily life as experienced by patients with inflammatory bowel disease
Open this publication in new window or tab >>Critical situations in daily life as experienced by patients with inflammatory bowel disease
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
National Category
Gastroenterology and Hepatology
Identifiers
urn:nbn:se:liu:diva-126621 (URN)10.1097/SGA.0000000000000211 (DOI)000380804500004 ()26870902 (PubMedID)
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
3. Healthcare as perceived by persons with inflammatory bowel disease – a focus group study
Open this publication in new window or tab >>Healthcare as perceived by persons with inflammatory bowel disease – a focus group study
Show others...
2017 (English)In: Journal of Clinical Nursing, ISSN 0962-1067Article in journal (Refereed) Accepted
Abstract [en]

Background: The quality of care plays an important role in the life of persons with a chronic disease. In order to define what persons with inflammatory bowel disease perceive as high quality care, greater focus must be placed on the individual’s own perspective of living with the condition. Design: A qualitative exploratory study was conducted based on focus groups. Methods: Five focus groups were conducted with adult persons living with inflammatory bowel disease, fourteen men and twelve women aged 19-76 years. The interviews were performed between January and June 2014. Results: The perceptions of healthcare from the perspective of persons living with inflammatory bowel disease were summarized in two categories: “Professional attitudes of healthcare staff” and “Structure of the healthcare organization”. Persons with Inflammatory bowel disease want to be encountered with respect, experience trust and obtain information at the right time. They also expect shared decision-making, communication and to encounter competent healthcare professionals. Furthermore, the expectations on and perceptions of the structure of the healthcare organization comprises access to care, accommodation, continuity of care, as well as the pros and cons of specialized care. Conclusion: The findings show the importance of establishing a respectful and trusting relationship, facilitating healthcare staff and persons with inflammatory bowel disease to work as a team in fulfilling individual care needs – but there is room for improvement in terms of quality of care. Relevance to clinical practice: A person-centred approach, which place the individual and her/his family at the centre, considering them experts on their own health and enabling them to collaborate with healthcare staff, seems important to reach a high quality healthcare organization for patients with IBD.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2017
Keyword
Focus group interview, inflammatory bowel disease, quality of care
National Category
Health Sciences
Identifiers
urn:nbn:se:liu:diva-134416 (URN)10.1111/jocn.13740 (DOI)
Available from: 2017-02-10 Created: 2017-02-10 Last updated: 2017-11-01

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Pihl Lesnovska, Katarina

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