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

Objectives To explore the clinical care experiences of young people with continence problems. Design In-depth semistructured 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 (9 females, 11 males) aged 11–20 years. 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.

limitations section. As most of their interviews were conducted via SKYPE and not face-to-face, they may have missed some nuances in respondents' answers that might be more evident had the interviews been truly live. Would the authors consider making a comment regarding this issue in their 'limitations' section? Also, the authors need to mention they don't know what cultural differences there may be if the same study was conducted in another country. These are very moot points that shouldn't detract from the Journal accepting this manuscript for publication.

REVIEWER
Francois Cachat Department of Pediatrics Division of pediatric nephrology University Hospital Lausanne Switzerland REVIEW RETURNED 17-Apr-2017

GENERAL COMMENTS
What does that mean? Clinical care experience of young people with continence problems.
In their original qualitative research, Katie Whale et al report their findings after interviewing young adolescents with enuresis / encopresis problems.
This is a well performed study, instructive, probably very useful for young (and no so young) doctors looking after such patients to help them delivering a patient focused health care.
After carefully reading this paper, I only have a few minor comments: Title: Appropriate. If feasible, it would be useful for readers / reviewer to find the word "qualitative" in the title. This is only a suggestion.
Abstract: Appropriate. In the settings, line 14 I would mention: primary and secondary care in the UK. Findings might differ in different countries.

Introduction:
Appropriate. Reference 2 refers to a number of children with incontinence in the UK, however reference 2 is probably not (looking at the reference table) the original paper citing this number. When feasible, especially with references dealing with "hard data" or numbers, I like to cite the original paper. If that is the original paper, that's fine.
In the same vein, the message with reference 28 could be reinforced with a reference actually mentioning percentage of adherence in children with enuresis : Dieter Baeyens, Anneleen Lierman, Herbert Roeyers, Piet Hoebeke, Johan Vande Walle. Adherence in children with nocturnal enuresis. J Pediatr Urol 2008).

Methods:
Good. It would be interesting to know how many children were approached for the study, how many refused, retracted. Obviously not possible for the "advert-reached" children /families. Also, comparing demographic between participants and non participants would be interesting, but I understand these data were not collected. Probably not, in that sense they probably "carry" years of relapse behind them, compared to younger ones /11-12 years old). However it is fascinating to see they report the same complaints. This might be mentioned in the text? It reinforces the message.
In the same vein, patients with organic cause are probably slightly different, but (see above) they convey the same message.

Conclusion:
If not too long, and knowing that 50% of readers just read the conclusion….. I would try to include as well, if feasible, the aspects of continuity of care, of shared decision and of clear explanation that were evoked in the answers of the participants.
References: See above in introduction. Also, ref 24 to 27 have "numbers" that have nothing to do there.

VERSION 1 -AUTHOR RESPONSE
Reviewer 1 1. Abstract line 24 ? should read 'patient focussed appointments Response: This has been added