Experiences of Parents and Solid Organ-transplanted Adolescents: A Qualitative Framework Analysis through Focus Groups. The TransplantKIDS Mental Health Project

Abstract

Background Solid organ transplantation is the optimal treatment for children and adolescents with end-stage organ failure. However, the biopsychosocial challenges faced jointly by the various types of solid organ recipients have received little attention from a multidimensional and qualitative approach in paediatric populations. This is the first study based on focus groups to identify the unmet care needs perceived by transplanted adolescents and parents throughout the pre-, peri-, and post-surgical phases of various types of solid organ transplantation. Methods Two focus groups were conducted with five adolescent transplant recipients and five parents, respectively, at the Children's Hospital of La Paz University Hospital in Spain. The focus groups followed a biopsychosocial theoretical framework and used a semi-structured moderating guide. Participants were asked open-ended questions about aspects of healthcare that they would have liked to change or improve, followed by specific questions about biomedical, psychological, and social aspects that were not spontaneously addressed. The sessions were conducted using a video call, audio-recorded, and automatically transcribed. Thematic framework analysis was used to examine the data, involving familiarisation, identifying a thematic framework, indexing, charting, mapping, and interpretating. Results The findings revealed several unmet care needs, highlighting the importance of addressing social and psychological aspects of care throughout the transplantation process. Key issues common to both informant groups were inconveniences regarding the distance to the hospital and long waiting times for outpatient hospital visits, as well as the importance of peer support, humanised interaction with healthcare personnel, and mental health care during the whole process. Conclusions These findings will inform the design of future multifaceted prehabilitation interventions to prepare patients and parents for solid organ transplantation. This study highlights the importance of understanding the experiences and unmet needs of adolescent transplant recipients and their families in order to improve healthcare delivery and clinical outcomes.