“It’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis

TY - JOUR

T1 - “It’s just horrible”

T2 - a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis

AU - Dibley, Lesley

AU - Coggrave, Maureen

AU - McClurg, Doreen

AU - Woodward, Sue

AU - Norton, Christine

PY - 2017/5/26

Y1 - 2017/5/26

N2 - 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. This study sought to understand ‘what it is like’ to live with bowel dysfunction and the impact this has on people with MS and carers. 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. 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. 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 the management of bowel dysfunction can inform clinical care and referral pathways.

AB - 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. This study sought to understand ‘what it is like’ to live with bowel dysfunction and the impact this has on people with MS and carers. 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. 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. 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 the management of bowel dysfunction can inform clinical care and referral pathways.

KW - Bowel dysfunction

KW - Constipation

KW - Faecal incontinence

KW - Multiple sclerosis

KW - Qualitative research

UR - http://www.scopus.com/inward/record.url?scp=85019763873&partnerID=8YFLogxK

U2 - 10.1007/s00415-017-8527-7

DO - 10.1007/s00415-017-8527-7

M3 - Article

C2 - 28550483

SN - 0340-5354

SP - 1

EP - 8

JO - Journal of Neurology

JF - Journal of Neurology

ER -