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2023 HSR&D/QUERI National Conference Abstract

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4126 — Find the Positive Aspects of Caring for a Veteran Post-Stroke: A Thematic Analysis of Data from the Experiences of Caregivers

Lead/Presenter: Constance Uphold,  GRECC, NF/SG Veterans Affairs Health System
All Authors: Uphold CR (GRECC, NF/SG Veterans Affairs Health System), Bopp C (NF/SG Veterans Affairs Health System) Montieth A (University of Florida, College of Health Education and Behavior) Eliazar-Macke N (NF/SG Veterans Affairs Health System) Orejuela M (NF/SG Veterans Affairs Health System) Freytes, IM (NF/SG Veterans Affairs Health System)

Objectives:
Family caregivers play a critical role in the rehabilitation process of stroke survivors. Clinicians and researchers have mainly focused on the negative consequences of strokes and asked family caregivers to discuss their needs and stressors to design problem-focused interventions and studies. A new approach to creating caregiver programs is to focus on the positive aspects of caregiving. Our objective was to partner with research participants to determine what advice caregivers offered and strategies they used to achieve rewarding, caregiving experiences.

Methods:
Subjects were stroke caregivers who participated in two randomized clinical trials. These caregivers were recruited from eight VA medical centers located in diverse areas of the county. Trained data collectors asked open-ended questions and interviewed caregivers over the telephone using a previously tested interview guide. The interviews were audiotaped and transcribed verbatim. Template analysis was used to summarize and organize the data into domains to identify common themes. The analysis was conducted by an interdisciplinary team of researchers (i.e., three nurses, one mental health counselor, and one public health graduate student). The team kept an ongoing audit trail of notes and memos to document and track decisions made during the analysis. Each theme was described, illustrated with relevant quotes, and interpreted by the team. The qualitative team regularly met with the larger investigative team to receive feedback and questions about the findings.

Results:
The sample consisted of 30 caregivers of Veterans who had at least one activity of daily living deficit and whose stroke had occurred within the previous year. The majority of caregivers were 60 years of age or older, female, white, and had completed at least one year of education beyond high school. Eight themes were identified: 1) importance of being informed, 2) learning to ask and receive help, 3) staying positive and hopeful 4) maintaining self-care and taking time for self, 5) laughing and using humor, 6) remembering to encourage and understand that the stroke survivor is facing many changes, and 7) being patient and taking one day at a time. Caregivers also shared creative strategies, such as buying elastic stretch pants for the survivor, playing easy jigsaw puzzles, creating scavenger hunts, and getting a new pet.

Implications:
Caregivers are in ideal positions to provide advice and insight into how best to approach caregiving with a creative, optimistic, encouraging attitude that includes humor, understanding, knowledge, and patience. New caregivers are likely to engage in strategies that are recommended by fellow caregivers. Researchers and clinicians can use these findings to design interventions and programs to help caregivers reframe the negative stressors of caring for Veterans post-stroke into positive, rewarding experiences.

Impacts:
The findings can guide the design of novel interventions to improve outcomes that are grounded in the experience of stroke caregivers. The advice and creative strategies recommended by caregivers in this study are now available on the national RESCUE Stroke Caregiver website that is a free, comprehensive resource available to the public.