Understanding the psychological needs of renal young adults
Research type
Research Study
Full title
Understanding how best to meet the psychological needs of renal young adult patients
IRAS ID
326169
Contact name
Amy Waugh
Contact email
Sponsor organisation
Northern Care Alliance
Duration of Study in the UK
0 years, 5 months, 28 days
Research summary
Kidney disease presents a number of challenges in patients’ lives such as frequent hospital visits, dietary and fluid restrictions, and invasive medical procedures and treatments. Many areas of life are affected by chronic kidney disease such as their health, identity, emotions, family, and lifestyle. Compared to the general population, they have a poorer quality of life and an increased risk of psychological difficulties. For young kidney patients there can be additional complications such as the impact on peer relationships and moving from child service. Young adults are at increased risk of loss of transplant, emergency admissions post-transplantation, non-attendance to clinic appointments, and non-adherence to medication. There is currently little research which indicated how best to support the psychological needs of this group of patients.
We would like to invite patients who are currently under the care of the renal young adult clinic at Salford Royal to take part in a focus group, where we hope to explore both the psychological impact of being a renal young adult patient and also how they feel their psychological needs would be best met. Taking part in the focus groups will be voluntary and if patients decide they would like to help us they will be offered the chance to join either an in person at Salford Royal or an online focus group, which will last between 1-1.5 hours. We hope to hold two focus groups in total, each with around 7-10 patients. After the focus groups have taken place, audio recordings of the focused will be typed up and analysed by the researchers. We will use our results to improve the service we offer, will also plan to share summaries of the results with patients and professional colleagues.LAY SUMMARY OF STUDY RESULTS:
This study set out to explore young adults’ views on having a renal condition. Specifically, we wanted to find out more from young people about their views on their psychological health and how this could be supported better by a renal psychology service.Key findings/Results:
A total of two participants took part in focus group interviews. Both participants were male and in their mid-20s. Three major themes emerged from the focus group data:
1. “Transition into adult services” - Young adults reported feeling different to their peers, citing increased responsibilities and demands on their time as contributing factors. Furthermore, they described how these responsibilities increased during transition to adult services.
2. “The experience of renal psychology” - Young adults reported being unsure about the role of psychology in renal services, noting that this was not a service they had been aware of in children’s renal services. Young adults spoke of their experiences of completing psychometric screening measures and reported feeling that this had opened up discussions about their mental health during their renal young adult clinic appointments. They discussed the format of questionnaires, preferring to do these online. Finally, it was highlighted that there was a need for renal psychology services to ensure that they introduce themselves and their role as part of the renal multidisciplinary team.
3. “What would help young adults access renal psychology” - Young adults spoke about the importance of open and honest communication with clinicians, explaining that it is important to them that they understand the reasons for a referral into renal psychology. Young adults discussed the importance of being aware of their options for renal psychology appointments (e.g., F2F/remote). Finally, young adults spoke about the importance of a first impression of renal psychology. Young adults felt that it was important that renal psychologists introduce themselves within their first appointments into the Renal Young Adult Clinic.Researchers also considered reflected on the research and parallels with clinical practice with this younger population and considered implications for clinical practice. Particularly, that this group are “hard to reach” and require flexibility around their many other commitments (family, medical, employment and social) in order to be able to engage with and attend research or medical appointments.
Conclusions and future plans:
Sadly, we were unable to recruit as many young people into this focus group as we were hoping to. This has meant that it would be quite difficult to publish the results of the focus group as initially intended. However, we have thought very carefully about the information provided during this focus group, and we have used this to consider how we can improve the service that is currently provided by renal psychology within the renal Young Adult Clinic (YAC). As a direct result of the focus group, over the coming year we plan to make some changes to how we provide our service, including:
- Improving how we introduce our psychology questionnaires which are sent before renal Young Adult Clinic.
- Having a psychologist attend renal Young Adult Clinic, so that young adults can meet them informally and find out more about what psychology can offer our young adult patients as part of the renal young adult multidisciplinary team.
- We also hope to offer some psychology groups with the aim of supporting young people to manage their psychological health and transition from child to adult services.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
23/WM/0096
Date of REC Opinion
10 May 2023
REC opinion
Further Information Favourable Opinion