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Living with irritable bowel syndrome: A patient perspective on everyday life, health care encounters and patient education
Ersta Sköndal University College, Enheten för forskning i palliativ vård. Ersta Sköndal University College, Department of Health Care Sciences.
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Place, publisher, year, edition, pages
Stockholm: Karolinska institutet , 2010. , 84 p.
Keyword [en]
coping, health care relationships, illness experience, irritable bowel syndrome, learning, life world, lived body, patient education, patient perspective, shame, unhomelikeness
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-1712ISBN: 978-91-7409-997-3 (print)OAI: oai:DiVA.org:esh-1712DiVA: diva2:553078
Public defence
2010-10-22, Aulan, Ersta Sköndal högskola, Stigbergsgatan 30, Stockholm, 09:32
Opponent
Supervisors
Available from: 2012-09-26 Created: 2012-09-18 Last updated: 2012-09-26Bibliographically approved
List of papers
1. Learning to live with irritable bowel syndrome: Experiences of a group-based patient education program
Open this publication in new window or tab >>Learning to live with irritable bowel syndrome: Experiences of a group-based patient education program
2010 (English)Article in journal (Refereed) Submitted
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-1720 (URN)
Available from: 2012-09-26 Created: 2012-09-26 Last updated: 2015-02-24Bibliographically approved
2. Learning to live with irritable bowel syndrome.: The influence of a group-based patient education programme on peoples’ ability to manage illness in everyday life.
Open this publication in new window or tab >>Learning to live with irritable bowel syndrome.: The influence of a group-based patient education programme on peoples’ ability to manage illness in everyday life.
2011 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 25, no 3, 491-498 p.Article in journal (Refereed) Published
Abstract [en]

Background: Living with chronic irritable bowel syndrome sets limitations in peoples’ everyday lives. This is due to bad health and the difficulty to find strategies that will manage their problem. In encounters with health care providers, these people feel that they are not getting the appropriate support to manage their illness-related troubles, and they perceive themselves to be insufficiently informed about the disease.

Aim: To evaluate the influence of a group-based patient education programme about irritable bowel syndrome, on people’s ability to manage their illness in everyday life.

Methods: The study used an evaluative research design. Fifty-one individuals with irritable bowel syndrome completed the ways of coping questionnaire, and the irritable bowel syndrome severity scoring system, before and after participating in a multidisciplinary group-based patient education programme.

Results: In the participants’ self assessments, statistical significances (p > 0.05) were found for the mean frequency of efforts used on the coping strategies distancing and escape-avoidance. Distancing was used more often after the education programme, while escape-avoidance, was used more seldom. The proportional use of the strategy self-controlling (relative score) was enhanced after the education programme. The participants’ overall severity of symptoms was significantly reduced after the education programme. The individuals with a clinically noteworthy improvement in symptom severity (decrease £ 50) had greater changes in relative score values than those that showed a lesser improvement in symptom severity.

Conclusion: Coping patterns were changed and symptoms were scored significantly less severe among the participants who participated in the education programme. Controlled studies following individuals over a longer period are suggested to establish the validity and sustainability of these changes, and qualitative interview studies would provide additional understanding about the significance of the separate parts of the education programme, and about the meaning of the programme to peoples’ everyday lives as a whole.

Place, publisher, year, edition, pages
Wiley: , 2011
Keyword
irritable bowel syndrome; patient education; coping; learning; chronic illness; self-management
National Category
Health Sciences
Identifiers
urn:nbn:se:esh:diva-1504 (URN)10.1111/j.1471-6712.2010.00855.x (DOI)
Available from: 2012-04-10 Created: 2012-04-10 Last updated: 2017-12-07Bibliographically approved
3. Being in the patient position: experiences of health care among people with irritable bowel syndrome
Open this publication in new window or tab >>Being in the patient position: experiences of health care among people with irritable bowel syndrome
2010 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 20, no 8, 1116-27 p.Article in journal (Refereed) Published
Abstract [en]

The purpose of this study was to gain in-depth understanding of what it is like for a person with irritable bowel syndrome to be in the patient position in encounters with health care providers. We conducted qualitative interviews with nine individuals. Our analysis, guided by interpretive description, revealed experiences of unsupportive and supportive encounters. Unsupportive encounters were shaped by humiliation, insignificance, and abandonment. Not feeling believed and acknowledged as persons made the participants lose trust in their own experience, which enhanced their unfamiliar mood of being in the world. Supportive encounters were less prominent. These were characterized by openness and acknowledgment of the patient's lifeworld. Feeling significant and being listened to promoted feelings of being in a partnered, cocreating relationship. It is reasonable to assume that care originating in the patient's lifeworld would support the patients to use their strength to manage illness and regain familiarity in everyday life.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-699 (URN)10.1177/1049732310369914 (DOI)20463359 (PubMedID)
Available from: 2010-10-20 Created: 2010-10-20 Last updated: 2017-12-12Bibliographically approved
4. Struggling with an unfamiliar and unreliable body: the experience of irritable bowel syndrome
Open this publication in new window or tab >>Struggling with an unfamiliar and unreliable body: the experience of irritable bowel syndrome
2009 (English)In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, Vol. 1, no 1, 29-38 p.Article in journal (Refereed) Published
Abstract [en]

Aim: To describe the phenomenon living with irritable bowel syndrome from a life-world perspective.

Background: Ten to twenty per cent of the adult population in the world is known to live with irritable bowel syndrome. The life-world experience of people with irritable bowel syndrome has been paid little attention. A deeper understanding about the phenomenon living with irritable bowel syndrome is of interest for the future development of care.

Design and methods: The study was performed using a phenomenological method. Data was collected by in-depth, open interviews performed in 2006, with nine persons between 25–55 years, diagnosed with irritable bowel syndrome. The interviews were analysed according to the method of Giorgi.

Results: Six interrelated key constituents have been identified: Having an altered self-image, feeling ashamed, distrusting the body, feeling tired, blaming oneself, and finding solutions. A structure has been formulated, describing that living with irritable bowel syndrome means struggling with an unfamiliar and unreliable body. Tiredness, distrust, and feelings of shame towards the body bring about limitations in everyday life. At the same time, living with irritable bowel syndrome means having a strong will to exceed the limitations and become familiar with one self.

Conclusion: This study suggests that living with irritable bowel syndrome means to struggle with an unfamiliar and unreliable body that brings about changes of self-image and limitations in every day life. Feelings of distrust, shame and embarrassment towards troublesome symptoms, are important contributions to the limitations experienced.

Relevance to clinical practice: Nurses have a major role to play in the care for people with irritable bowel syndrome. A caring perspective, in which the life-world is central, is an important approach to care for these persons. Using the dialogue as a forum where patients can share their unique life-world experiences lets nurses gather knowledge that is essential in helping patients identify and acknowledge new and positive understandings of the lived body.

Keyword
Chronic illness, Interviews, Patients’ experience, Phenomenology
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-395 (URN)10.1111/j.1365-2702.2008.01001.x (DOI)
Available from: 2010-06-29 Created: 2010-06-29 Last updated: 2015-12-08Bibliographically approved

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