Despite the establishment of heart transplantation as a life-saving therapy for children and adolescents, little research has focused on the biopsychosocial impact of the transplant process. Few studies have captured the subjective experiences of young heart transplant recipients. This program of research examined how pediatric heart transplant recipients construct their worlds and the meanings they ascribe to their transplant experience. A grounded theory approach was implemented which guided data collection and analysis. A total of twenty-seven adolescents participated in semi-structured qualitative interviews. Findings illuminate pediatric heart transplantation to be a pervasive experience, with consequent impact on physical, psychological and social well-being. Participants described various biopsychosocial processes and experiences that occurred over the course of their transplant journey. Data analysis yielded themes of quality of life reflecting notions of temporality including: 1) the pre-transplant experience – a struggle to survive, 2) the transplant surgery and hospitalization – a difficult transition and 3) the post-transplant experience – an awakening and transformation. This research identifies that heart transplantation, which may contain elements of suffering and loss, may ultimately enhance young recipients’ overall quality of life. Results reveal the possibility that adolescent heart transplant recipients not only adapt to transplantation, but also potentially experience associated growth-enhancing experiences. An emergent theoretical model is presented, with implications for practice and research.

Despite the establishment of heart transplantation as a life-saving therapy for children and adolescents, little research has focused on the biopsychosocial impact of the transplant process. Few studies have captured the subjective experiences of young heart transplant recipients. This program of research examined how pediatric heart transplant recipients construct their worlds and the meanings they ascribe to their transplant experience. A grounded theory approach was implemented which guided data collection and analysis. A total of twenty-seven adolescents participated in semi-structured qualitative interviews. Findings illuminate pediatric heart transplantation to be a pervasive experience, with consequent impact on physical, psychological and social well-being. Participants described various biopsychosocial processes and experiences that occurred over the course of their transplant journey. Data analysis yielded themes of quality of life reflecting notions of temporality including: 1) the pre-transplant experience – a struggle to survive, 2) the transplant surgery and hospitalization – a difficult transition and 3) the post-transplant experience – an awakening and transformation. This research identifies that heart transplantation, which may contain elements of suffering and loss, may ultimately enhance young recipients’ overall quality of life. Results reveal the possibility that adolescent heart transplant recipients not only adapt to transplantation, but also potentially experience associated growth-enhancing experiences. An emergent theoretical model is presented, with implications for practice and research.

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