Experiences of parents and adolescents throughout the solid-organ transplantation process: a focus group study

Solid-organ transplantation is the optimal treatment for children and adolescents with end-stage organ failure. However, the biopsychosocial challenges faced jointly by this paediatric population have received little attention. This study is one of the few qualitative studies based on focus groups to identify the unmet care needs perceived by transplanted adolescents and parents of paediatric transplant recipients throughout the pre-, peri-, and post-surgical phases of various types of solid-organ transplantation.

Qualitative data was collected using a purposive sample selected according to the concept of information power at the Children's Hospital of La Paz University Hospital (Madrid, Spain). The adolescent dataset comprised one focus group with four adolescent transplant recipients and one additional participant who completed an individual in-depth interview using the same interview guide. The parent dataset consisted of one focus group with five parents of paediatric transplant recipients. A biopsychosocial theoretical framework and semi-structured moderating guide were used. Participants first answered open-ended questions about desired healthcare improvements, followed by targeted questions on biomedical, psychological, and social issues that were not spontaneously addressed. No further focus groups with additional participants were required, as theoretical sufficiency had been attained. Thematic framework analysis was used to examine the data, involving familiarisation, identifying a thematic framework, indexing, charting, mapping, and interpretation. Finally, the COnsolidated criteria for REporting Qualitative research (COREQ) were followed.

Significant unmet care needs were identified throughout the transplantation process, particularly in the social and psychological domains. Participants reported concerns regarding long travel distances to hospitals, extended waiting times for outpatient visits, limited access to academic support, and insufficient peer and family support. The need for a designated social work contact person, compassionate healthcare interactions, and consistent access to mental health care was also highlighted.

The findings will guide the development of prehabilitation programs and longitudinal support interventions for solid-organ transplant patients and their families, emphasising the need to understand their experiences and unmet needs to enhance healthcare and clinical outcomes.

The study protocol was registered at clinicaltrials.gov (NCT05441436). De-identified individual participant data will be made available in the Supplementary Material File.