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"It's just horrible": a qualitative study of patients' and carers' experiences of bowel dysfunction in Multiple Sclerosis

"It's just horrible": a qualitative study of patients' and carers' experiences of bowel dysfunction in Multiple Sclerosis

Dibley, Lesley, Coggrave, Maureen, McClurg, Doreen, Woodward, Sue and Norton, Christine (2017) "It's just horrible": a qualitative study of patients' and carers' experiences of bowel dysfunction in Multiple Sclerosis. Journal of Neurology, 264 (7). pp. 1354-1361. ISSN 0340-5354 (Print), 1432-1459 (Online) (doi:10.1007/s00415-017-8527-7)

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Abstract

Background:
Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and / or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers.

Objective:
To understand 'what it is like' to live with bowel dysfunction and the impact this has on people with MS and carers.

Methods:
Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling. Data were analysed using a pragmatic inductive-deductive method.

Results:
Participants identified multiple psychological, physical and social impacts of bowel dysfunction. Health care professional support ranged from empathy and appropriate onward referral, to lack of interest or not referring to appropriate services. Participants want bowel issues to be discussed more openly, with clinicians instigating a discussion early after MS diagnosis and repeating enquiries regularly.

Conclusions:
Bowel dysfunction impacts on the lives of people with MS and their carers; their experience with care services is often unsatisfactory. Understanding patient and carer preferences about management of bowel dysfunction can inform clinical care and referral pathways.

Item Type: Article
Uncontrolled Keywords: Bowel dysfunction, Constipation, Faecal incontinence, Multiple sclerosis, Qualitative research
Faculty / Department / Research Group: Faculty of Education & Health
Faculty of Education & Health > Department of Adult Nursing & Paramedic Science
Faculty of Education & Health > Health & Society Research Group
Last Modified: 27 May 2018 22:15
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
URI: http://gala.gre.ac.uk/id/eprint/17362

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