Exploring patient, family and clinician perspectives about the psychosocial factors influencing access to kidney transplantation and transplant outcomes for children
Ji Soo Kim1,2,3, Stephen D. Marks1,3, Jo Wray1,2.
1Paediatric Nephrology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom; 2Centre for Outcomes and Experience Research in Children’s Health Illness and Disability ORCHID, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom; 3University College London Great Ormond Street Institute of Child Health, University College London, London, United Kingdom
Introduction: 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).
Material and methods: 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.
Results: 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.
Conclusions: 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.
