Siblings of pediatric bone marrow transplant recipients: their lived experience as they transition through the bone marrow transplant trajectory

Abstract

Bone marrow transplantation (BMT) is the treatment of choice for many malignancies and other childhood disorders. Acknowledging that the entire family is affected when a child undergoes a BMT, increasing research attention has been given to understanding this experience from the perspectives of recipients, parents and the family as a whole. Yet, minimal attention has been directed at understanding the experience of healthy siblings as they transition through the BMT experience. Before intervention studies can be undertaken that will help healthy siblings transition through the BMT experience, knowledge about the impact of the experience on siblings is needed. Accordingly, a qualitative study guided by the philosophy of hermeneutic phenomenology was conducted to elicit detailed descriptions of the lived experience of siblings.

Participants were children, adolescents and young adults with a sibling who had undergone a BMT during childhood. Participants were recruited from a pediatric BMT clinic in Western Canada. Semi-structured, open-ended interviews that explored siblings’ memories about what it is like to be a sibling of a child who has had a BMT were conducted with each participant. Demographic data and field notes were recorded. All interviews and field notes were transcribed. The transcripts were reviewed repeatedly for significant statements in an attempt to find meaning and understanding through themes.

The data analysis revealed the essence of siblings’ lived experience of transitioning through the BMT trajectory as an interruption in family life. Four themes communicated the essence of siblings’ lived experience: (1) life goes on, (2) feeling more or less a part of a family, (3) faith in God that things will be okay, and (4) feelings around families. Differences between donor and non-donor siblings are highlighted. Siblings’ recommendations for health care professionals are also provided. Results from this study will help health professionals better anticipate the diverse and shifting needs and demands of siblings of pediatric BMT patients. Recommendations for future research and innovations in nursing interventions are provided.