G228 Understanding the experience of young people undergoing maintenance haemodialysis therapy in an adult unit

Aim

To understand the experience of young adults on haemodialysis, and utilise their unique perspectives in the development of young person-centred haemodialysis services.

Background

Children, adolescents and young adults constitute <5% of patients with end-stage renal failure (1). The fraction of these who attend dialysis units are a significant minority even among their peers, as 73% of 18–24 year olds on RRT in the UK have a functioning transplant (2).These patients have been found to experience a strong sense of ‘difference’ in terms of body image and ability to participate in activities compared to peers; ‘thwarted or moderated dreams and ambitions’; and ‘uncertainty and liminality’ (3). NICE guidelines on transition, advocate for the ‘co-production’ of ‘person-centred’ transition services to build independence (4). A 2010 BAPN/RA report discussed the value of Young Adult Renal Units, offering outpatient services (5). Our project explores young adults’ views experience of dialysis and their ideas for an individualised service.

Methods

We conducted semi structured interviews with 9 dialysis patients (5 male, 4 female) aged 19–24 years, who were under the care of Barts Health NHS Trust and had been on haemodialysis for at least 6 months. We used a narrative analysis approach, interpreting responses using the experience of care model. 8 out of 9 gave consent for audio recording, allowing for two researchers to establish concordance for each.

Results

A number of common themes emerged in our discussions. 7/9 participants mentioned the negative impact of being surrounded by significantly older patients, 7/9 highlighted a lack of access to internet and entertainment and 8/9 described the impact dialysis had on future prospects. 8/9 wanted a dedicated young adult unit, with integration of flexible dialysis times, peer mentors and education resources all ranked of high importance.

Conclusion

There was strong support for a dedicated young adult unit among this cohort of patients, who felt it would improve their experience on dialysis, and have a positive impact on their health and wellbeing. Ensuring smooth transition between services and adequate clinical support will be key considerations in its design.