UCLA

Purpose

Despite the prevalence of hematological malignancies in early adulthood, very little is known about hematopoietic cell transplantation among adolescents and young adults, and even less is known about their transition from the completion of therapy to early survivorship. In this qualitative study, we investigated the impact of the cancer experience on sense of life potential and perception of the future from the perspectives of adolescents and young adults after hematopoietic cell transplantation.

Methods

In-depth interviews were conducted with adolescents and young adults who underwent allogeneic or autologous hematopoietic cell transplantation between the ages of 15-29 years and were 6-60 months post-treatment. Interview transcripts were systematically coded based on constructivist grounded theory.

Results

Eighteen adolescents and young adults participated and described how they came to understand the lifelong, chronic nature of cancer survivorship. "Improving to where?" was a question raised in the post-treatment period that reflected participants' confusion about the goals of treatment and expectations for survivorship. Participants reported bracing themselves for "something bad" to deal with the uncertainty of medical and psychosocial effects of treatment. They struggled to move forward with their lives given their substantial health risks and found it necessary to "roll with the punches" in order to adjust to this new reality.

Conclusions

Adolescents and young adults who undergo hematopoietic cell transplantation are at significant risk for long-term and late effects in survivorship. Age-appropriate interventions are needed to support these survivors as they manage their fears about the future while enhancing health and well-being.