Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.
This study investigated the experience of primary caregivers of stroke survivors, while acknowledging limited theories that inform caregiving over time. Interviews and detailed data analysis yielded preliminary theoretical constructs that address disruption in occupations, caregiver burden, coping, and the subjective experience of navigating the health care system. Additional support mechanisms within current OT practice could prevent caregiver burden and occupational loss.
Primary Author and Speaker: Angela Salvadia
Additional Authors and Speakers: Deanna Bertone, Shaylyn Fisher, Kaitlyn Fisher, and Emily Nelson
Contributing Authors: Tamera Keiter Humbert
PURPOSE: The aim of this study was to acknowledge existing theories for caregivers of individuals who have experienced a stroke and provide preliminary findings regarding their unique experiences related to occupational deprivation, caregiver burden, and coping within the caregiver role. The intention was to help OTPs better address the needs of the caregiver population, as well as provide a way of understanding the long-term effects of caregiving, which will ultimately influence current practice. This study aimed to answer the following question: what are the perceived long-term needs of caregivers at least one year after their care recipient’s stroke?
METHODS: In this qualitative exploratory study, grounded theory methodology was used to understand the self-perceived experiences of caregiving over time. Twelve stroke support groups in Pennsylvania were invited to participate through convenience sampling. Nominated sampling was then used to recruit participants from these support groups. Of the 11 nominated participants, six individuals from one stroke support group, provided written informed consent to participate in the study. Individual, qualitative interviews were conducted to generate a preliminary understanding of the long-term experiences of caring for an individual who had experienced a stroke. The interviews were semi-structured and included open-ended questions to elicit personal stories and lived experiences of the participants.
RESULTS: The participants reported on a variety of caregiving topics, which coalesced into four major themes, which deepened the understanding of the long-term caregiver experience, to form a preliminary foundation for future theory development. The foundational themes that emerged were labelled as follows: frustrations, recommendations and beneficial supports, long-term adjustments and relationships.
CONCLUSIONS: The reported findings were similar between participants. This preliminary theoretical foundation can be applied to identify the long-term needs that are present within the caregiver population. This is valuable to inform additional support mechanisms within current occupational therapy practice to increase prevention of caregiver burden and major disruption in occupations. Keywords. stroke, caregivers, caregiving, occupational therapy, long-term
References
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