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Always considering the potential need for a toilet: A content analysis of 20 interviews with persons living with inflammatory bowel disease
Linköping University, Department of Clinical and Experimental Medicine. Linköping University, Faculty of Health Sciences.
Primary Care Center of Eksjö, Eksjö, Sweden.
School of Health Sciences, Jönköping University, Jönköping, Sweden/Ryhov Hospital, Jönköping County Council, Jönköping, Sweden.
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective: Inflammatory bowel disease (IBD) is a well explored medical condition; in contrast, few studies have evaluated IBD as a chronic illness as experienced by the patient.

Method: Twenty participants were included in a purposeful sample. Interview responses were subjected to a qualitative systematic text condensation analysis.

Result: The main finding of the analysis was the description of life with chronic IBD as one where the patient is “always considering the potential need for a toilet”. This new description emerged from three main parts of the analysis: firstly, the experience of what it is like to be affected by the disease; secondly, the accompanying consequences of the illness; and thirdly, the adaptation needed to restore one’s normal life.

Conclusion: IBD shares several characteristics with other chronic illnesses. Patients pass through a series of stages including managing their disease, controlling the symptoms and consequences of the illness, and normalizing social interactions and restoring a normal life, all with the particularity of always having to consider the potential need for a toilet.

Keyword [en]
Lived experience, inflammatory bowel disease, content analysis, chronic illness, qualitative
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-84632OAI: diva2:560868
Available from: 2012-10-16 Created: 2012-10-16 Last updated: 2012-10-16Bibliographically approved
In thesis
1. Quality improvement in the care of patients with inflammatory bowel disease
Open this publication in new window or tab >>Quality improvement in the care of patients with inflammatory bowel disease
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

A range of studies have supported the existence of a gap between what medicine could possibly deliver and what it actually does deliver. This is also true for the delivery of care to patients with inflammatory bowel disease (IBD) and several international stakeholders have called for action. The aim of this thesis was to describe, study and evaluate a quality improvement intervention (QII) in the care for patients with IBD in a population-based setting, with special reference to clinical redesign, performance measurement and patient experience.

The patient population on which this thesis is based was recruited from the gastroenterological unit at the Department of Internal Medicine, Highland Hospital, in Eksjö, Sweden. The QII was implemented through iterative improvement cycles in the early years of the 21st century. Data from yearly check-ups of patients including identification, gender, disease duration, medication, four questions about quality of life (QoL) and laboratory results were entered into a local register created as part of the QII. In addition, data on admittances to hospital were retrieved. The interactions between staff and patients as well as the elements of the delivered care were analysed by applying the model of clinical microsystems (CMS) and the Chronic Care Model (CCM). The QII was studied using a retrospective, descriptive analysis with quantitative elements. A multidimensional quality tool, the Clinical Value Compass (CVC), was applied to assess the quality of care. Later, the CVC and the quality model by Donabedian (Df) were merged to create a quality framework for IBD, which was tested on already existing data in the local IBD register. In a study of patients’ experiences of living with IBD, a content analysis was applied to interviews with 20 purposefully sampled patients.

The main components of the redesign, described as a “patient- and demand-directed care”, were: - A specialist nurse staffed the outpatient clinic full time and could offer patients who contacted the clinic an acute visit at the outpatient clinic within two days. - Yearly checkups to either the nurse or physician were offered, either as telephone calls or as traditional visits to the clinic. A letter preceded the contact and included a QoL questionnaire and instructions for laboratory testing of haemoglobin (Hb). The QII led to decreasing numbers of hospitalizations compared to national data and better access to care. The prevalence of anaemia in the population was 6% and was correlated to a risk of being admitted to hospital during the year. The analysis of the interviews showed several parallels to the experiences of people who  live with other chronic diseases than IBD. Consequences of living with IBD were associated with everyday life and the adaptations needed to restore one’s life. It was always shadowed by the person’s worry that he or she might potentially need a toilet.

The main contribution of this thesis is the overall example of how a quality improvement intervention including continuous performance measures and frameworks, as well as the study of patients’ experiences, can be applied in a local population-based setting. The understanding of the interactions between patients, staff and the healthcare system was described and analysed through the application of CMS and the CCM. As a whole, this thesis contributes to the international quest for quality improvement efforts to bridge the quality gap in the delivery of IBD care today.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2012. 30 p.
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1324
National Category
Medical and Health Sciences
urn:nbn:se:liu:diva-84633 (URN)978-91-7519-804-0 (ISBN)
Public defence
2012-11-02, Qulturum, Länssjukhuset Rybohov, Jönköping, 13:00 (English)
Available from: 2012-10-16 Created: 2012-10-16 Last updated: 2012-10-18Bibliographically approved

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