"Tough Things You're Going to Have to Go Through": Dyadic Interview Study Including the Perspectives and Needs of Patients and Their Caregivers Post-Hematopoietic Cell Transplant.

Abstract

Background: Patients undergoing hematopoietic cell transplant (HCT) and their caregivers are under a significant amount of stress throughout the HCT process with fear of disease recurrence, graft failure, and many other HCT-related complications. However, the needs and perspectives of patients undergoing HCT and their caregivers as dyadic units over the peri-HCT period are continuing to be studied and are an evolving field of research.

Objective: To better understand patient and caregiver perspectives throughout the HCT course, patients undergoing HCT and their caregivers were able to opt-in to interviews at multiple time points post-HCT as part of a larger study, Roadmap 2.0 (an app intervention trial to support caregivers of patients undergoing HCT).

Methods: Semistructured, dyadic (patient and caregiver) interviews took place around hospital discharge, day +30, +60, +90 and +120 post-HCT. Patient and caregiver discussions at each interview centered around a variety of topics including desired post-HCT information, coping, and additional resources for patients and their caregivers with the goal of gathering feedback to better inform future studies after Roadmap 2.0 and better understand the needs and perspectives of patients undergoing HCT and their caregivers. Interviews were transcribed and double-coded with inductive and deductive content analysis using the framework method to identify key findings.

Results: A total of 10 patient-caregiver dyads participated, resulting in 48 dyadic interviews (1 patient died). Multiple findings emerged out of these rich discussions, including the progression from immediately post-discharge to when patients undergoing HCT and their caregivers were further out from HCT. The progression was as follows: "desire for data and tracking" to "need for specific restrictions and outline on forward progress," to "need for additional directed information as progressing forward," to "bigger picture and getting back to life," and concluding with "reflection and fear." Most patients and caregivers felt they were provided sufficient general anticipatory guidance throughout the HCT process but called for more specific expectations and guidance on a variety of issues. Many patients and caregivers used multiple coping strategies during HCT, with their coping strategies largely staying consistent over time. Additionally, the need for further acknowledgment and focus on the stress HCT places on caregivers was frequently discussed.

Conclusions: Patients undergoing HCT and their caregivers were largely satisfied with the information and anticipatory guidance they were given but stressed a desire for more specific information throughout their HCT course. A variety of coping strategies are used by patients and their caregivers post-HCT, and these were consistently used over time. However, increased awareness and acknowledgment of the strain HCT places on caregivers are needed within the health care setting and in the general population. Future directions include continued incorporation of qualitative interviews with patients and caregivers as HCT-related interventions and apps.