Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Whale K

PROVIDER: S-EPMC5652505 | biostudies-literature | 2017 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Whale Katie K Cramer Helen H Wright Anne A Sanders Caroline C Joinson Carol C

BMJ open 20171016 10

<h4>Objectives</h4>To explore the clinical care experiences of young people with continence problems.<h4>Design</h4>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.<h4>Setting</h4>Primary and secondary care in the UK.<h4>Participants</h4>We interviewed 20 participants (9 females, 11 males) aged 11-20 years. There were six participants ...[more]

PMID: 29042374

Similar Datasets

Project description:BackgroundAdverse Childhood Experiences (ACEs) such as, physical and sexual abuse, neglect, or living in a household with domestic violence or substance misuse, can have negative impacts on mental and physical health across the lifecourse. A deeper understanding of the kinds of services that people affected by ACEs feel they need to overcome these negative impacts is required.Review questionHow do people affected by ACEs between the ages of 3 to 18 experience support and services in the UK? What are their needs relating to services and support?MethodsSystematic review of qualitative evidence. We harvested relevant studies from existing systematic reviews of qualitative evidence located through a search of 18 databases. Included studies needed to be published in or after 2008, conducted in the UK, and report the views of people exposed to ACEs relating to their service needs. We included studies with participants who were affected by ACEs between 3 and 18 years old with no restriction on the age at which they accessed services.ResultsWe identified 71 reviews from which we harvested 238 references on title and abstract screening. Following full text screening and quality and relevance appraisal we included 20 studies. Each of the included studies focussed on a specific ACE population. Almost half focused on young people who were fostered, looked-after or leaving care. No studies focussed on parental incarceration or divorce. Young people value emotional and practical support. Service providers were most valued for displaying empathy, being non-judgemental, and being active listeners. Supportive relationships, especially with adults, are a key factor in feeling understood.ConclusionsPeople affected by ACEs describe the importance of stability and continuity in the support they receive. These factors are important for allowing necessary time to overcome obstacles and build up trust. Research often frames response to ACE in terms of short term individual psychological outcomes but these findings highlight the importance of focussing on wider social factors to encourage meaningful engagement with services.

Project description:BackgroundThe numbers of older people experiencing both homelessness and memory problems are growing, yet their complex health, housing and care needs remain undelineated and unmet. There is a critical gap in understanding what can improve the care, support and experiences of this group. In this qualitative study we explore how stakeholders understand memory problems among older people in the context of homelessness and consider what they judge gets in the way of achieving positive outcomes.MethodWe conducted reflexive thematic analysis of qualitative interviews (n = 49) using a semi-structured topic guide, with 17 older people (aged ≥ 50 years) experiencing memory problems and homelessness, 15 hostel staff and managers, and 17 health, housing and social care practitioners. We recruited participants from six homelessness hostels, one specialist care home and National Health and Local Authority Services in England.ResultsWe identified four overarching themes. The population is not taken seriously; multiple causes are hard to disentangle; risk of exploitation and vulnerability; and (dis)connection and social isolation. The transience and lack of stability associated with homelessness intensified the disorienting nature of memory and cognitive impairment, and those providing direct and indirect support required flexibility and persistence, with staff moving beyond traditional roles to advocate, provide care and safeguard individuals. Memory problems were perceived by frontline staff and older people to be overlooked, misinterpreted, and misattributed as being caused by alcohol use, resulting in pervasive barriers to achieving positive and desired outcomes.ConclusionsEfforts to meet the needs of older people living with memory problems and experiencing homelessness and future interventions must reflect the complexity of their lives, often in the context of long-term alcohol use and current service provision and we make suggestions as to what could be done to improve the situation.

Project description:IntroductionIncontinence is a major problem for people with dementia (PWD) and their family/friend caregivers, often causing substantial harm, including residential care admission. The incontinence needs of PWD are complex and different from those of people without dementia. The aim of this study was to investigate carer and nurse perceptions of continence service provision and potential improvements.MethodsA secondary analysis of qualitative data was undertaken. Semi-structured interviews (n = 45) were undertaken with PWD, family caregivers and healthcare professionals (continence or dementia nurses) in the UK. PWD and caregivers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Framework analysis was used. The COREQ Research guideline statement assists reporting.ResultsFour themes were found. Firstly, there was a lack of awareness of the service and waiting time. Many caregivers were unaware of continence services and dementia nurses often viewed it as a pad provision service. Caregivers reported long waits not meeting their urgent needs. Secondly, product provision was often inadequate. Most caregivers self-purchased all or many products and substantial variation in product provision was found. The number of products provided was often inadequate. Thirdly, a sense that "nothing can be done" was observed by some nurses and caregivers. Caregivers believed that, if nothing else, care information should be provided. Finally, suggestions for improvements were made, including proactive service signposting, joint clinics with dementia services, improved information before crisis point, dementia training for continence nurses and improved product provision.ConclusionContinence service inadequacies for PWD and caregivers have been reported for many years. This study demonstrates service provision remains unsatisfactory in the UK. Stakeholders propose a range of service improvements. It highlights that listening to the voices of PWD, caregivers and nurses is crucial for services seeking to improve continence services for PWD living at home.

Project description:ObjectivesPeople aged 16-24 are more likely than other age groups to acquire sexually transmitted infections (STI). Safetxt was a randomised controlled trial of a theory-based digital health intervention to reduce STIs among 16-24 year-old people in the UK. We report results of qualitative research regarding participants' perceptions and experiences of the intervention and trial participation.DesignQualitative thematic analysis following a critical realist paradigm of written open feedback comments provided in the 12-month follow-up questionnaire and semistructured interviews.SettingSafetxt trial participants were recruited from UK sexual health clinics.ParticipantsTrial inclusion criteria: people aged 16-24 diagnosed with or treated for chlamydia, gonorrhoea or non-specific urethritis. Optional open feedback provided by 3526 of 6248 safetxt participants at 12 months and interviews with a purposive sample of 18 participants after the trial.ResultsWe summarise and report results in seven broad themes. According to recipients, the safetxt intervention increased awareness of the importance of avoiding STIs and ways to prevent them. Participants reported improved confidence, agency, sexual well-being and communication about sexual health with partners, friends and family. Recipients attributed increased condom use, increased STI testing after (rather than before) sex with new partners, and more confident partner notification to the intervention. Recipients described a reduced sense of isolation and stigma in having an STI. Control group participants reported that having had an STI and receiving control texts asking them to report any changes in contact details acted as reminders to use condoms and get tested. We also summarise participant recommendations for future interventions and studies.ConclusionsWhile control group participants reported precautionary behaviours were 'triggered' by trial participation, intervention recipients reported additional benefits of the intervention in increasing precautionary behaviours and in broader aspects of sexual health such as confidence, communication, emotional well-being and agency.Trial registrationISRCTN registry ISRCTN64390461.

Dataset Information

'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

Design

Setting

Participants

Results

Conclusion

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets