Despite the prevalence of hematological malignancies during early adulthood, very little is known about the hematopoietic cell transplantation experience among adolescents and young adults, and even less is known about their transition from the completion of therapy to long-term survivorship. Therefore, this dissertation research explored the experiences of critical transitions in early survivorship, such as discharge to the home setting, involvement of an informal caregiver at home, the trajectory towards self-care, and reentry to work and school, among a sample of adolescents and young adults after hematopoietic cell transplantation.
Grounded theory, influenced by Constructivism, guided all aspects of the study design. In-depth interviews, using a semi-structured interview guide, were conducted with 18 adolescents and young adults, who had received autologous or allogeneic hematopoietic cell transplantation for primary hematologic malignancy at age 15-29 years and were 6-60 months post-treatment. Interview transcripts were systematically analyzed to identify emergent categories and generate theory.
Findings from this study highlight participants’ experiences across three critical transitions in early survivorship. The first two transitions are sequential and have psychosocial, emotional, and behavioral components, while the third is not sequential and is more focused on an unfolding perspective. The transitions are: 1) a shift from hospitalization to the home and high reliance on informal caregivers; 2) attempts to resume previously normal activities, such as work and school; and 3) an emotional and existential shift involving a reconceptualization of the perception of the future. Participants described the context in which these transitions occurred, specific challenges they faced, and adaptive strategies they developed.
While the findings cannot be generalized to all adolescent and young adult survivors of hematopoietic cell transplantation, this study provides insight into the trajectory towards self-care, the reliance on informal caregivers, and the experiences of critical transitions in early survivorship. The findings also shed light on the extensive, unexpected, and persistent life disruptions that participants experienced. By exploring deeper understanding of the survivorship trajectory of adolescents and young adults after hematopoietic cell transplantation, these findings can be used to inform clinical practice, guide future research, and shape policy.
