'What does that mean?': a qualitative exploration of the primary and secondary clinical care experiences of young people with continence problems in the UK

Katie Whale, Helen Cramer, Anne Wright, Caroline Sanders, Carol Joinson

Research output: Contribution to journalArticle (Academic Journal)peer-review

3 Citations (Scopus)
238 Downloads (Pure)

Abstract

Objectives: To explore the clinical care experiences of young people with continence problems.

Design: In-depth semi-structured qualitative interviews were conducted by Skype and telephone, with the addition of art-based participatory research techniques. Transcripts were analysed using inductive thematic analysis.

Setting: Primary and secondary care in the UK.

Participants: We interviewed 20 participants (nine females, 11 males) aged 11-20. There were six participants with bedwetting alone, five with daytime wetting alone, five with combined (day and night) wetting, and four with soiling.

Results: We identified four themes: appointment experiences, treatment experiences, engagement with treatment, and internalisation and externalisation of the continence problem. Patient-focused appointments using age-appropriate language were highly desirable. Continuity of care was highlighted as an important aspect of positive clinical experiences, however this was found to be rare with many participants seeing a different person on each visit. Participants had tried a wide range of treatments for their continence problems with varying degrees of success. Relapse and treatment failure were common. Experiencing relapse was distressing and diminished participants’ belief in the success of future treatments, and undermined adherence. Participants would be seen to adopt two opposing coping strategies for dealing with their continence problem, internalisation and externalisation.

Conclusion: Incontinence in young people is challenging to manage. Young people may need to try a range of treatments before their symptoms improve. Due to challenges in treatment there is an increased risk of poor adherence. During patient-focused appointments clinicians should work to build rapport with patients and use age-appropriate language. Involving young people in their own care decisions is important. The way in which young people understand their continence problem can influence their coping strategies and adherence to treatment regimes.
Original languageEnglish
Article numbere015544
Number of pages0
JournalBMJ Open
Volume7
Issue number10
Early online date16 Oct 2017
DOIs
Publication statusPublished - Oct 2017

Keywords

  • Incontinence
  • continence
  • Paediatric
  • Qualitative

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