Caregiver experiences managing information prior to hematopoietic stem cell transplantation and after transition to...

Caregivers of adults undergoing hematopoietic stem cell transplantation (HSCT) manage extensive transplant-related information, including medications, support services, lifestyle changes, treatment risks, and potential complications. The overwhelming volume of information can cause uncertainty and stress. While prior studies highlight caregivers' unmet information needs, little is known about their responses to pre-transplant and post-discharge education. This study explores caregivers' experiences and elicits their recommendations for managing transplant-related information during these critical periods.

This qualitative study included demographic data from 14 caregivers of adults who underwent autologous or allogeneic HSCT between July 2020 and June 2021. Due to follow-up loss, 12 caregivers completed semi-structured interviews. Recorded interviews were transcribed and analyzed for key themes and caregiver recommendations regarding pre-transplant and post-discharge information needs.

Caregivers' experiences varied across two critical periods. Three themes emerged: (1) feeling overwhelmed by the breadth of information they receive pre-transplant; (2) before transplant, gathering information to gain a sense of control and understanding; and (3) facing unanticipated challenges post-discharge despite receiving education during hospitalization. Recommendations included the following: (1) identifying sources of support when feeling overwhelmed with information; (2) seeking information that matches caregiver learning needs; and (3) learning from others who understand the transplant experience.

Tailored education is crucial to addressing caregivers' informational, emotional, and practical needs as they navigate transplant-related information before HSCT and after discharge.