A qualitative study of patients’ experience of living with inflammatory bowel disease: A preliminary focus on the notion of adaptation

Matini, Lawrence; Ogden, Jane

doi:10.1177/1359105315580463

Cited by 22 publications

(34 citation statements)

References 22 publications

(21 reference statements)

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“…Loss of sense of self has been identified as integral to chronic disease experience generally, 31 and other researchers interested in normality in IBD have also observed that identity influences views on normality. 9 15 17 For a normal life to be achieved, the disease and its impacts have to be accommodated via adaptation, and thereby integrated into a new, and perhaps dynamic, sense of self. We did not talk to anyone with UC who described their life as being the same as before the onset of disease.…”

Section: Discussionmentioning

confidence: 99%

Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England

et al. 2017

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ObjectiveTo provide a framework that is able to categorise whether patients are able to adapt to and lead a ‘normal’ life with ulcerative colitis (UC) and to detail the factors that influence this.DesignQualitative research study using in-depth semi-structured interviews.SettingFour clinical sites in the West and East Midlands regions of England.Participants28 adult patients diagnosed with UC for years between 1 and 22.ResultsMedication was rarely sufficient for patients to adapt to UC and live as ‘normal’ a life as possible. Virtually all patients tested and adopted non-medical adaptation methods to improve physical and psychological well-being, to help them carry on working and to prevent embarrassment. In addition, some patients benefited from outside support providing them with practical, emotional and/or financial help. In conjunction with adaptation strategies and the time to adapt, this meant that some patients with severe clinical disease were able to maintain a sense of normality in life. Patients reported that clinicians were not always receptive to discussion of the broader context of life with UC.ConclusionsPatients’ experience of UC and their ability to adapt in order to maintain a sense of normality in life is a complex interplay of symptoms, adaptation strategies and outside support. Over time patients test out a variety of non-medical adaptation strategies. Awareness of this may help clinicians and researchers to understand patients’ views on the role of medical and other therapies. Further research around the utility of this framework in clinical practice and research is now required.Trial registration numberISRCTN56523019, results.

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Section: Discussionmentioning

confidence: 99%

Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England

et al. 2017

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“…Bowel disease, the subject's not right for conversation.' (Hall et al, 2005, pg.451 (Matini andOgden, 2015, p.2497).…”

Section: Having An Invisible Illnessmentioning

confidence: 99%

Living with Inflammatory Bowel Disease: A review of qualitative research studies

Fourie

Jackson

Aveyard

2018

International Journal of Nursing Studies

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Patients with Inflammatory Bowel Disease face a variety of problems, often their priorities and those of healthcare professionals differ greatly. Healthcare professionals have little evidence needed to provide adequate, holistic care to this group. With a rise in the Inflammatory Bowel Disease population in newly industrialised countries it is estimated that the condition is turning into a global disease, potentially making long term care unsustainable. More evidence is needed to understand the concerns of this group.

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“…IBD is a life-long disease and often affects young, workingaged individuals. While many studies underline the importance of adaptation in IBD patients to maintain their working capacity and quality of life, little is known about how this is achieved [22]. Many educational programs developed for IBD patients have shown no or limited effect on patient psychosocial outcomes [11,12,23].…”

Section: Discussionmentioning

confidence: 99%

The impact of an adaptation course on health-related quality of life and functional capacity of patients with inflammatory bowel disease

Haapamäki

Heikkinen²,

Sipponen

et al. 2018

Scandinavian Journal of Gastroenterology

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A qualitative study of patients’ experience of living with inflammatory bowel disease: A preliminary focus on the notion of adaptation

Cited by 22 publications

References 22 publications

Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England

Adapting to ulcerative colitis to try to live a ‘normal’ life: a qualitative study of patients’ experiences in the Midlands region of England

Living with Inflammatory Bowel Disease: A review of qualitative research studies

The impact of an adaptation course on health-related quality of life and functional capacity of patients with inflammatory bowel disease

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