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

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.

Peer support in patients with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT): a qualitative study.

Peer support, a distinctive form of social support in which patients share emotional, social, and practical help based on their own lived experience of illness and treatment, positively impacts patient-reported outcomes in cancer populations. However, data on peer support experiences among hematopoietic stem cell transplant (HSCT) recipients are limited. We conducted semi-structured qualitative interviews among 12 allogeneic HSCT recipients who were ≤6 months post transplant without any complications and 13 allogeneic HSCT recipients >6 months post transplant and living with chronic graft-versus-host disease. Interviews explored patients' experiences with peer support and their preferences for a peer support intervention tailored to the needs of HSCT recipients. While the majority (70%) of participants reported no formal experience with peer support, most (83%) articulated themes of potential benefits of peer support (e.g., managing expectations and uncertainty that accompany HSCT). Most participants (60%) reported a preference for a peer support intervention prior to the HSCT hospitalization. Despite the limited data on peer support interventions among HSCT recipients and lack of formal peer support experience in most of our cohort, our study shows that HSCT recipients clearly acknowledge the potential benefits of a peer support intervention, and they prefer that it start prior to transplantation.