Abstract
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.
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Acknowledgements
We are grateful to those with MS and their carers for their participation in this study.
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The authors declare that there are no conflicts of interest.
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The authors declare that the research presented in this manuscript has been conducted in accordance with the ethical standards for research (Declaration of Helsinki 1964, amended 2013), and has been approved by the research ethics committee at the lead university.
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The study was funded by a grant from Aims2Cure, supported by the UK Multiple Sclerosis Society.
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Dibley, L., Coggrave, M., McClurg, D. et al. “It’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis. J Neurol 264, 1354–1361 (2017). https://doi.org/10.1007/s00415-017-8527-7
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DOI: https://doi.org/10.1007/s00415-017-8527-7