Connecting Suffering and Hope: The Experience of Children and Adolescents With Cancer During Hematopoietic Stem Cell Transplantation

Abstract

Background

Hematopoietic stem cell transplantation is an aggressive, frequent, and relevant therapy for cancer. Studies on this subject predominantly address parents’ and health professionals’ experiences, and rarely feature the voices of children and adolescents. The purpose of this study is to enhance the understanding of the experiences of children and adolescents with cancer undergoing hematopoietic stem cell transplantation.

Method

Using symbolic interactionism and a narrative research method, data was collected and analyzed from in-depth interviews with seven children and adolescents (aged 6–18 years, up to 18 months post-transplant and under oncological follow-up), at the hematopoietic stem cell transplant service of a reference institution in Brazil.

Findings

The experiences are challenging because they involve complex and dual interactions that intertwine social processes and signs related to suffering and hope. Two thematic categories were identified: (Re)living Suffering in Transplantation and Signifying Transplantation as Hope for a New Chance of Life.

Discussion

The experiences of the participants were influenced and marked by past diagnosis and treatment that generated overload, exhaustion, suffering, and fragility in the present. Participants revealed the centrality of the symbolism of transplantation as a “new chance of life” and a propeller of hope and coping oriented towards a future beyond the disease and treatment. Health professionals caring for this population must access the child’s and youth’s voice to understand their needs, expectations, and feelings, aiming to accommodate them and provide unique support in their battle and life intersected by cancer and transplantation, and the symbolic constructions related to these elements present in their experiences.