The Caregiver’s Role Across the Bone Marrow Transplantation Trajectory

Abstract

Background: Approximately 50 000 people undergo bone marrow transplants (BMTs) each year worldwide. With the move to more outpatient and home care, family caregivers are playing an ever-increasing role. However, there is little information regarding the needs and well-being of caregivers of individuals undergoing BMT. Objective: The study purpose was to gain a better understanding of the BMT experience across the trajectory from the perspective of the family caregiver. Methods: Qualitative interviews were conducted with 15 family caregivers during and 4 months after BMT. Interviews were recorded, transcribed verbatim, and analyzed using a content analysis approach. Results: Uncertainty and need for more information were 2 major underlying themes noted across the early BMT trajectory. Caregivers reported feeling overwhelmed and juggling multiple roles, including (a) ‘‘interpreter,’’ which included obtaining and translating medical information to their partner, family, and social network; (b) ‘‘organizer,’’ which included arranging and coordinating medical appointments (pre- and post-BMT) for the patient, but also juggling the needs of immediate and extended family members; and (c) ‘‘clinician,’’ which included assessing and identifying changes in their significant other, with many reporting that they had to be ‘‘vigilant’’ about or ‘‘on top of’’ any changes. Caregivers also reported the most challenging aspects of their role were to ‘‘be strong for everyone’’ and ‘‘finding balance.’’ Conclusions: Our results underscore the unique needs of family caregivers as a consequence of BMT. Implications for Practice: A greater understanding of the adaptation of caregivers will lead to the development of effective interventions for families going through BMT.