Objective There is a growing need to assess the long‐term quality of life (QOL) of pediatric oncology patients since many children now survive their disease. This paper highlights the subjective perspectives of pediatric cancer patients and specifically explores how experiencing cancer at a young age impacts adolescents in the areas of social functioning, peer relationships, and QOL. The findings emerged from a qualitative research study that explored how pediatric oncology patients ascribe meaning to their illness. Methods Study participants were recruited from four Canadian academic pediatric hospitals. In this study, we used an interpretative description approach. Semistructured interviews were completed, transcribed verbatim, and coded through the method of constant comparison. Results A total of 37 children and adolescents (n = 19 female; 51%) participated. The majority of participants were diagnosed with leukemia (n = 16; 43%) or lymphoma (n = 9; 24%). Sixty‐two percent of participants were adolescents between the ages of 13 and 18 years (n = 23). Data illustrated a unique adolescent experience, which has been reported as a subset of the original population. Adolescent participants noted an accelerated experience of maturation, which invited reflections of gratitude as well as feelings of isolation and disconnect from peers. Participants were saddened to have “missed out” on normative parts of childhood. Conclusion Findings highlighted experiences of accelerated maturity that prompted adverse social outcomes for adolescent participants, which impacted their QOL. Future research is needed to explore the intersection of accelerated maturity attributed to illness, social functioning, and QOL. Peer support through technology engagement is suggested for this population.
Background Anonymous living donor transplantation is a potential strategy to address the shortage of available organs for transplant. A living anonymous donor (LAD) is a donor with no biological connection and whose identity is unknown to the recipient. This study captured the lived experiences of pediatric liver transplant recipient families whose child received an organ from a LAD. Methods Qualitative data collection and analysis were guided by a theoretical framework of phenomenology. Data analysis highlighted themes through an inductive process of reviewing transcript paragraphs to code for significant statements that represented key concepts and captured depth of experience. Results A total of nine interviews were conducted with 10 participants. Data analysis yielded themes of emotional turbulence through their transplant journey. Pre‐transplant experiences were characterized by feelings of helplessness and desperation. Receiving a LAD transplant prompted shock, relief, and acceptance of the donation. Post‐transplant experiences were characterized by altered life‐perspectives and varied levels of connectedness to the donor, marked by gratitude and concern for donor well‐being. Conclusion Anonymous donation in liver transplantation is perceived by recipient families as a remarkable gift and a viable donor option. Our preliminary findings can be used to inform strategy development regarding future delivery of care.
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