Abstract

<h3>Introduction</h3> Kidney transplantation is often seen as the optimal form of kidney replacement therapy for children and young people (CYP) with stage 5 Chronic Kidney Disease (CKD5). Psychosocial factors have been cited to delay their access to a kidney transplant, however it is unclear what these factors are. We undertook a multi-centre qualitative study that explored the range of psychological and social factors that CYP, their carers and their paediatric nephrology multi-disciplinary team (MDT) perceived to influence how soon a CYP with CKD5 accesses a kidney transplant. This included factors that were perceived to influence kidney transplantation outcomes or deemed important to patients and their families in terms of their quality of life (QoL). <h3>Material and methods</h3> Semi-structured interviews were conducted with CYP, their carers and their paediatric nephrology MDT across 7 tertiary paediatric nephrology units in the United Kingdom. These interviews were reviewed for pertinent themes using Thematic Analysis following the approach of Braun and Clarke. <h3>Results</h3> A total of 36 interviews were conducted with 13 families and 16 members of the paediatric nephrology MDT. The majority of participating families identified as White (57%), followed by Black (22%) or Asian (21%). The following themes were deemed important to accessing kidney transplantation and post-transplant outcomes: health beliefs; relationship with and trust in healthcare; support networks; family relationships; socioeconomic circumstances; culture and race; and mental health and coping strategies. Specific challenges from living with CKD5 and living through the COVID-19 pandemic were also discussed due to their impact on QoL and accessing a kidney transplant. <h3>Conclusions</h3> There are a wide range of psychosocial factors that are perceived to influence a CYP’s access to kidney transplantation. Longitudinal and prospective studies are needed to fully assess the relationship between these psychosocial factors and a CYP’s access to, and outcomes of, kidney transplantation.

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