Date Presented 03/28/20
HSCT is a lengthy and debilitating cancer treatment. Caregivers of HSCT recipients report distress and reductions in their own self-care. A caregiver wellness intervention based on behavioral activation was developed and implemented in order to assess its feasibility and acceptability. Future research will explore the efficacy of the intervention, which is well-suited for delivery by OTs working in cancer rehabilitation.
Primary Author and Speaker: Jamme Morency
Additional Authors and Speakers: Kathleen Lyons
Contributing Authors: Lynn Root, Kate Caldon, Christi Hayes, Susan Brighton
PURPOSE: Hematopoietic stem cell transplantation (HSCT) is a lengthy cancer treatment that requires the presence of an informal caregiver and strict adherence to medical recommendations (Applebaum, et al., 2016). Existing interventions for caregivers generally provide education on pre-determined caregiving tasks or self-management approaches. Those programs often have low uptake and modest effects (Sorensen et al., 2002). We created an intervention to enhance caregiver well-being by allowing them to address self-selected topics out of a menu of activities that have been shown to reduce caregiving stressors and increase resiliency. We refer to the intervention as the Ready to Connect, Actively Relax, and Exercise (CARE) Program. The purpose of this study was to evaluate the feasibility and acceptability of the intervention.
DESIGN: We conducted a mixed method, single-arm, feasibility study involving informal caregivers of patients scheduled to receive HSCT. This analysis explored (1) the feasibility of recruitment and data collection activities and (2) the acceptability of the six-session intervention in terms of retention and session content i.e., activities that were targeted by the caregivers, number of goals set, education provided, and the number of times that activities were practiced in session.
METHOD: Caregivers completed measures of self-efficacy, coping style, and distress upon enrollment (∼ 4 weeks before patient’s hospital admission), upon admission, and at 30 and 100 days post-stem cell reinfusion. Caregivers began the six-session Ready to CARE program when the stem cell transplant recipient was admitted to the hospital for reinfusion. The program began with an occupational profile of stressors and buffers, which allows the intervention to target the unique strengths and needs of the caregivers. The intervention used a behavioral activation approach to help caregivers incorporate wellness activities into their daily routines, augmented by education and opportunities to practice activities during sessions. Descriptive statistics were used to summarize the feasibility and acceptability data.
RESULTS: Forty-one caregivers were approached and 20 (49%) enrolled in the study and completed the baseline assessment. The second assessment was difficult for caregivers to complete due to time demands (50% retention rate), but 19 (95%) and 17 (85%) caregivers completed the third and fourth assessments, respectively. Fourteen caregivers (70%) completed the six-session program within eight weeks. Caregivers set an average of 8.3 goals (range 1 – 19, sd = 4.6) during the program and addressed an average of 2.9 different topics (range 1-5, sd = 1.3) with those goals. Caregivers most often set goals related to exercise (75% of participants), caregiving activities (40%), and stress management (40%), with fewer caregivers addressing leisure (25%), nutrition (20%), sleep (20%), self-care (20%), communication (20%), and social support (15%).
CONCLUSION: The program was acceptable and well-received by caregivers but modifications may need to be made in order to increase the feasibility of data collection and ability to enroll and retain caregivers who are most at risk of distress. Impact Statement: A feasibility study such as this is a first step in intervention development. The Ready to CARE program was developed with stakeholder input in response to a patient-identified area for clinical improvement. With the guidance of an occupational therapist, caregivers were able to select activities and education that were relevant to their unique circumstances and take action to address the stressors that can impact their own health and the health of the HSCT patient. Future research is needed to explore the efficacy of this approach.
References
Applebaum, A. J., Bevans, M., Son, T., Evans, K., Hernandez, M., Giralt, S., & DuHamel, K. (2016). A scoping review of caregiver burden during allogeneic HSCT: lessons learned and future directions. Bone Marrow Transplant, 51, 1416–1422. doi: 10.1038/bmt.2016.164
Sörensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. The Gerontologist, 42(3), 356-372. doi: 10.1093/geront/42.3.356
