Journal of Neurology

, Volume 264, Issue 7, pp 1354–1361 | Cite as

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

  • Lesley Dibley
  • Maureen Coggrave
  • Doreen McClurg
  • Sue Woodward
  • Christine Norton
Original Communication

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.

Keywords

Bowel dysfunction Constipation Faecal incontinence Multiple sclerosis Qualitative research 

References

  1. 1.
    DasGupta R, Fowler C (2003) Bladder, bowel and sexual dysfunction in multiple sclerosis. Drugs 63(2):153–166CrossRefPubMedGoogle Scholar
  2. 2.
    Mackenzie I, Morant S, Bloomfield G, MacDonald T, O’Riordan J (2014) Incidence and prevalence of multiple sclerosis in the UK 1990–2010: a descriptive study in the General Practice Research Database. J Neurol Neurosurg Psychiatry 85:76–84CrossRefPubMedGoogle Scholar
  3. 3.
    Coggrave M, Emmanuel A (2010) Neurogenic bowel management. In: Fowler C, Panicker J, Emmanuel A (eds) Pelvic organ dysfunction in neurological disease. Cambridge University Press, CambridgeGoogle Scholar
  4. 4.
    Khan F, McPhail T, Brand C, Turner-Stokes L, Kilpatrick T (2006) Multiple sclerosis: disability profile and quality of life in an Australian community cohort. Int J Rehabil Res 29:87–96CrossRefPubMedGoogle Scholar
  5. 5.
    Bartlett L, Nowak M, Ho Y (2009) Impact of fecal incontinence on quality of life. World J Gastroenterol 15(26):3276–3282CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Porrett T, Cox C (2007) Coping and help-seeking behaviour in women with pelvic floor dysfunction. J Assoc Chart Physiother Women’s Health 101:4–15Google Scholar
  7. 7.
    Norton C, Dibley L (2013) Help-seeking for faecal incontinence in people with inflammatory bowel disease. J Wound Ostomy Cont Nurs 40(6):631–638CrossRefGoogle Scholar
  8. 8.
    Hazewinkel M, Sprangers M, Taminiau-Bloem E, van der Velden J, Burger M, Roovers J (2010) Reasons for not seeking help for severe pelvic floor symptoms: a qualitative study of survivors of gynaecological cancer. Int J Obstet Gynaecol 117(1):39–46CrossRefGoogle Scholar
  9. 9.
    Norton C, Thomas L, Hill J (2007) Management of faecal incontinence in adults: summary of NICE guidance. BMJ 334:1370–1371CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Duncan J, Sebepos-Rogers G, Poole-Wilson O, To C, Canavan J, Kariyawasam V et al (2013) Faecal Incontinence in inflammatory bowel disease: we don’t ask and they don’t tell. Gut 62(Suppl. 1):A79–A80Google Scholar
  11. 11.
    Bartlett L, Nowak M, Ho Y (2007) Reasons for non-disclosure of faecal incontinence: a comparison between two survey methods. Technol Coloproctol 11:251–257CrossRefGoogle Scholar
  12. 12.
    McClurg D, Beattie K, Lowe-Strong A, Hagen S (2012) The elephant in the room: the impact of bowel dysfunction on people with multiple sclerosis. J Assoc Chart Physiother Women’s Health 111:13–21Google Scholar
  13. 13.
    Norton C, Chelvanayagam S (2010) Bowel problems and coping strategies in people with multiple sclerosis. Br J Nurs 19(4):220–226CrossRefPubMedGoogle Scholar
  14. 14.
    Stebbins R (2001) Exploratory research in the social sciences. Sage, Thousand OaksCrossRefGoogle Scholar
  15. 15.
    Sandelowski M (2010) What’s in a name? Qualitative description revisited. Res Nurs Health 33:77–84PubMedGoogle Scholar
  16. 16.
    Stebbins RA (2001) Exploratory research in the social sciences. Sage Publications Ltd, Thousand OaksCrossRefGoogle Scholar
  17. 17.
    Spencer L, Ritchie J, O’Connor W (2003) Analysis: practices, principles and processes. In: Ritchie J, Lewis J (eds) Qualitative research practice: a guide for social science students and researchers. Sage Publications Ltd, London, pp 199–218Google Scholar
  18. 18.
    Duncan G, Khoo T, Yarnall A, O’Brien J, Coleman S, Brooks D et al (2014) Health-related QoL in early Parkinson’s disease: the impact of non-motor symptoms. Mov Disord 29(2):195–202CrossRefPubMedGoogle Scholar
  19. 19.
    Roach M, Frost F, Creasey G (2000) Social and personal consequences of acquired bowel dysfunction for persons with spinal cord injury. J Spinal Cord Med 23(4):263–269CrossRefPubMedGoogle Scholar
  20. 20.
    Jorgensen H, Nakayama H, Raaschou H, Pedersen P, Houth J, Olsen T (2000) Functional and neurological outcome of stroke and the relation to stroke severity and type, stroke unit treatment, body temperature, age, and other risk factors: the Copenhagen Stroke Study. Top Stroke Rehabil 6(4):1–19CrossRefGoogle Scholar
  21. 21.
    Dicianno B, Kurowski B, Yang J, Chancellor M, Bejjani G, Fairman A et al (2008) Rehabilitation and medical management of the adult with spina bifida. Am J Phys Med Rehabil 87(12):1026–1050CrossRefGoogle Scholar
  22. 22.
    Johnson V, Skattebu E, Aamot-Andersen A, Thyberg M (2009) Problematic aspects of faecal incontinence according to the experience of adults with spina bifida. J Rehabil Med 41:506–511CrossRefGoogle Scholar
  23. 23.
    Norton C, Dibley L (2012) Understanding the taboos about bladders and bowels. In: Gartley C, Klein M, Norton C, Saltmarche A (eds) Managing life with incontinence. Simon Foundation for Continence, Wilmette, pp 1–8Google Scholar
  24. 24.
    Paquette I, Varma M, Kaiser A, Steele S, Rafferty J (2015) The American Society of Colon and rectal surgeons’ clinical practice guideline for the treatment of fecal incontinence. Dis Colon Rectum 58:623–636CrossRefPubMedGoogle Scholar
  25. 25.
    Coggrave M, Norton C, Cody J (2014) Management of faecal incontinence and constipation in adults with central neurological diseases [Review]. The Cochrane Library. Available at: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD002115.pub5
  26. 26.
    Dohle C, Reding M (2011) Management of medical complications. continuum: lifelong learning. Neurology 17(3):510–529Google Scholar
  27. 27.
    Tullman M (2016) Symptomatic therapy in multiple sclerosis. continuum: lifelong learning. Neurology 10(6):142–172Google Scholar
  28. 28.
    Coggrave M (ed), on behalf of the MASCIP Bowel Management Guidelines Development Group (2012) Guidelines for the management of neurogenic bowel dysfunction in individuals with central neurological conditions. http://www.mascip.co.uk/wp-content/uploads/2015/02/CV653N-Neurogenic-Guidelines-Sept-2012.pdf. Accessed 14 May 2017
  29. 29.
    Buckley B (2006) Its the way you ask that matters: comparison of data relating to prevalence of incontinence aid use from two surveys of people with multiple sclerosis. J Wound Ostomy Cont Nurs 33:26–29CrossRefGoogle Scholar
  30. 30.
    Corry M, While A (2009) The needs of carers of people with multiple sclerosis: a literature review. Scand J Caring Sci 23:569–588CrossRefPubMedGoogle Scholar
  31. 31.
    Cheung J, Hocking P (2004) The experience of spousal carers of people with multiple sclerosis. Qual Health Res 14(2):153–166CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2017

Authors and Affiliations

  1. 1.Faculty of Health and EducationUniversity of GreenwichLondonUK
  2. 2.Barts Health NHS TrustLondonUK
  3. 3.Florence Nightingale Faculty of Nursing and MidwiferyKing’s College LondonLondonUK
  4. 4.Nursing, Midwifery and Allied Health Professions Research UnitGlasgow Caledonian UniversityGlasgowUK

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