JMIR Publications

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 experiences and perspectives of HCT patients and their caregivers as dyadic units have not been well-published to date.

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 HCT caregivers).

Methods:

Semi-structured, 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. Interviews were transcribed and double coded with inductive and deductive content analysis utilizing the Framework Method to identify key findings.

Results:

Multiple findings emerged out of these rich discussions including the progression from immediately post-discharge to when HCT patients 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 employed multiple coping strategies during HCT with their coping strategies largely staying consistent over time. The most common coping strategy used by patients and caregivers was “Coping through social networks.” Additionally, the need for further acknowledgement and focus on the stress HCT places on caregivers was frequently discussed. Feedback on the Roadmap 2.0 app and app design for this population were also gathered.

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 utilized by patients and their caregivers post-HCT and these were consistently utilized over time. However, increased awareness and acknowledgement of the strain HCT places on caregivers is needed within the healthcare setting and in the general population. Future directions include continued incorporation of qualitative interviews with patients and caregivers as HCT-related interventions and apps are designed, beta tested and used in larger studies. Clinical Trial: Health Information Technology System (“Roadmap 2.0”) in the Context of Hematopoietic Cell Transplantation (ClinicalTrials.gov NCT04094844, https://clinicaltrials.gov/study/NCT04094844).