It Takes a Village: The Importance of Social Support after Hematopoietic Stem Cell Transplantation, a Qualitative Study

Abstract

Social support is essential to the recovery of patients who have undergone hematopoietic stem cell transplantation (HSCT). We undertook a qualitative study to explore the specific sources and benefits of social support as experienced by HSCT recipients, as well as their unmet social support needs. We conducted semistructured interviews with 25 HSCT recipients recruited from the Dana Farber Cancer Institute's HSCT database. The interviews explored the sources of support that patients receive, the type of assistance social support networks provide to patients, and unmet needs of social support. Interviews were audio-recorded, transcribed, and coded using Dedoose software. The median age of participants was 63 years (range, 22 to 73 years), and 13 (52%) were female, 20 (80%) were white, and 9 (36%) had been diagnosed with acute myelogenous leukemia. Participants reported receiving a majority of support from immediate family and close friends, with the primary benefits of social support including help with essential daily tasks and household chores, and receipt of emotional support. Participants reported occasional support from other patients but highlighted a desire for increased connection with patients who have undergone the same treatment. Participants also communicated a desire for more guidance on how to optimize the support they do receive and the need for more educational resources for caregivers and supporters to enhance understanding of the HSCT process and lessen patient burden. Participants reported relying on support from their family, friends, and other social connections for essential aspects of their recovery and daily living following HSCT. Although there are many benefits from these relationships, patients emphasized the need for more guidance and resources to facilitate post-transplantation aid and support.

Keywords: Caregivers; Distress; HSCT; Hematopoietic stem cell transplantation; Psychological health; Quality of life; Social support; Social well-being; Supportive oncology.