Involvement of young people in a qualitative study that seeks to explore experiences of renal replacement therapy choice selection

Introduction: Patient and Public involvement (PPI) has become one of the drivers in health care and seen as an integral part of the research process. PPI promotes research questions that reflect the priorities and concerns of the relevant population and develops outcomes that are important to patients (INVOLVE, 2012; Evans et al, 2014; Hickey et al, 2018). Young adults with end-stage kidney disease are supported by clinicians and their families to make decisions about their preferred renal replacement therapy (NICE, 2018). However, they can become overwhelmed with the burden of long-term chronic illness and often struggle to accept diagnosis and prognosis and cope with the complex management of their condition (Coulter and Collins, 2011; Ritchie et al., 2012). They can consequently become disengaged with the service and less involved in their care (Ritchie et al, 2012; Robinski et al, 2014). The current study explores young people’s experiences of renal replacement therapy choice selection. The study team has involved young people in the study’s development.

Aims and objectives: The aim of the involvement group in this study is to involve the young people in all stages of the research process: ensuring that the research question has the correct focus, that the participant information sheet is clear and that the recruitment strategy is appropriate. In due course, the young people’s group will be involved in qualitative data analysis and in dissemination of findings.

Method: The involvement group comprised three people with experiences of dialysis and kidney transplant treatment as children and young adults. They were recruited via existing networks in the research team. A role description on what was to be expected of the group members was discussed, alongside what was expected from the research team (training and travel expenses for example). Communication is via face-to face meetings and also by email. This first face-to-face meeting discussed and shaped the research question, and the possible recruitment process. Further email discussions have explored the participant information sheet, consent forms plus the development of the video and poster advert to aid recruitment.

Results: The impact of PPI on the research process is already providing valuable insights into how the research design should be conducted. The first face-to-face meeting with the group highlighted the difficulties that young people face when making choice of renal replacement therapy, especially psychosocial impact and mental well-being, so the impact the choice makes on well-being was added as a secondary research question. The acceptability of the recruitment method (via social media) was discussed and a video advert was developed for the recruitment process. Members also contributed to the review of some of the research documents; participant information sheet, consent forms, posters, research proposal and piloted a validation questionnaire for suitability.

Impact: Involvement of patients helped situate the study to meet the current needs of young adults diagnosed with end stage renal disease who are faced with choosing dialysis or kidney transplantation.

Also displayed at Kidney Research UK Fellows Day