The Process of Adjustment Among Caregivers of Individuals with Spinal Cord Injury: A Qualitative Study
Technical Report,29 Sep 2015,28 Sep 2016
Marquette University Milwaukee United States
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This mixed-methods study aims to explore the experiences of veteran and civilian caregivers of individuals with SCI by collecting qualitative and quantitative data from 48 caregiver-care recipient dyads across four rehabilitation hospitals who together serve a diverse patient population. During our second year of funding, we have made significant progress on attaining project goals, including securing all relevant continuing institutional approvals, expanding the review of the relevant literature and existing programs and services for caregivers, and enrolling 28 participants 14 dyadsinto the study bringing our overall total to 32 dyads 64 participants. We received a total of 32 referrals on additional dyads during year 2 and continue to follow up on all referrals from interested participants during year 1 and 2.We have presented early findings at our second annual advisory board meeting and at 4 conferences including 1 international conference. Caregivers are sharing a variety of unmet needs related to their emotional, physical, and social quality of life QOL. Unmet needs are related to caregiver burden. Veteran dyads are reporting significantly more supplemental support and compensation for caregivers when compared to civilian dyads. For civilian dyads, poorer caregiver QOL and higher caregiver burden is significantly associated with higher anxiety and more pain experienced by their loved ones living with SCI. We have initiated follow-up interviews focused on deepening our understanding of support efforts and unmet needs. Taken together, we are confident that data from this study will help highlight unmet needs of caregivers and support the development of relevant and effective points of intervention for veterans and civilians across various sociodemographic groupings.
- Medicine and Medical Research