Stomas in IBD

• Research type

  Research Study

• Full title

  Stomas and IBD: how do people make decisions about surgery and does reality match anticipation?

• IRAS ID

  181928

• Contact name

  Lesley Dibley

• Contact email

  lesley.b.dibley@kcl.ac.uk

• Duration of Study in the UK

  0 years, 11 months, 31 days

• Research summary

  Whilst conducting previous studies for issues related to IBD, we have encountered people enduring debilitating symptoms and very poor quality of life, mainly due to persistent bowel incontinence regardless of whether their disease is active or quiet. Despite this, they remain very resistant to the idea of having an intestinal stoma formed, which would solve the incontinence and provide control. We know that there is very little information to guide patients about the emotional impact of living with a temporary or permanent stoma, which makes it hard for them to make an informed choice.
  A three phase qualitative study is proposed, to explore the ways in which people make decisions about stoma-forming surgery, and whether the reality of living with a stoma matches the anticipation. Participants will be recruited from hospital clinics, the UK IBD charity Crohn’s & Colitis UK, professional organisations and clinical networks.

  In Phase 1: four separate focus groups (6 – 8 people per group) with people with a temporary stoma, a permanent stoma, a recently-reversed stoma, or never had a stoma but worried about the possibility. In Phase 2: individual interviews with 32 people across the same categories as Phase 1, to explore in greater detail issues arising from the focus groups. In Phase 3: interviews with IBD physicians, surgeons, nurses and stoma nurses to gain their perspective on talking about stoma-forming surgery to people with IBD, and what they think patients think of having a stoma.

  All focus groups and interviews will be recorded digitally, transcribed professionally, and analysed using a simple thematic analysis technique. We aim to answer the research question: What are the concerns about, and the realities of, living with a stoma for IBD, and how does this influence decision-making regarding stoma-forming surgery?

• REC name

  London - Fulham Research Ethics Committee

• REC reference

  15/LO/1024

• Date of REC Opinion

  30 Jun 2015

• REC opinion

  Further Information Favourable Opinion