Abstract
Informal caregivers are an essential component of stroke survivor care, yet they are at risk for poorer outcomes due to their own unmet needs, feelings of isolation and abandonment, and lack of personal resources. While a substantial body of research literature on stroke caregiving exists, there is a notable research gap related to the specific needs of working age (18-64) stroke caregivers. The purpose of this study was to characterize unmet needs and concerns, caregiver self-efficacy, social support, and quality of life of working age caregivers of stroke survivors. A cross-sectional descriptive design was used. Participants (N=103) included family or friends that provided unpaid care for a stroke survivor outside of healthcare institutions recruited through national organizations, local support groups, and Facebook ads. Participants completed an online survey comprised of questions exploring sociodemographic characteristics, stroke survivor functional independence, perceived social support, and caregiver needs and concerns, strain, self-efficacy, and quality of life. Descriptive statistics and linear regression analysis were performed using the IBM Statistical Program for Social Sciences (SPSS) v28 software package. In individual regression models, stroke survivor functional independence, caregiver self-efficacy, perceived social support, race, gender, relationship with the stroke survivor, transportation, and responsibilities outside of the caregiving role were predictive of caregiver quality of life. In multiple regression models, stroke survivor functional independence, caregiver self-efficacy, race and gender were statistically significant predictors of caregiver quality of life. In conclusion, this study adds to the current literature by exploring unmet needs and concerns of working age caregivers of stroke survivors and relationships between caregiver quality of life and sociodemographic characteristics, stroke survivor functional independence, perceived social support, and caregiver needs and concerns, strain, and self-efficacy. A greater understanding of these needs can inform intervention designs to meet the unique needs of a diverse population of informal caregivers of stroke survivors.
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