Bridging the Gap: Meeting the discharge needs of stroke patient/caregiver dyads

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DESCRIPTION (provided by applicant): Stroke is the leading cause of disability in the U.S. More than 4.5 million stroke survivors live in the community with functional limitations requiring the assistance of family caregivers. Stroke occurs suddenly, is unpredictable, life-disrupting, and does not allow patients and families sufficient time to prepare for the numerous post-stroke caregiving needs. Stroke patients typically transition from being cared for by multiple providers in inpatient rehabilitation to relying on one person (most often a spousal caregiver) who is unprepared to handle the overwhelming demands and constant vigilance required for adequate care at home. Spousal caregivers are more likely to suffer from the ill-effects of caregiving than other family members. They describe feeling isolated, abandoned, and alone, and what frequently follows is a predictable trajectory of depression and a downward spiral of deteriorating physical health. Research has failed to address the crisis-driven approach to decisions about caregiving resources and discharge destination, culminating in serious mismatches between patient needs and spousal caregiver capacity to provide post-discharge care. Stroke discharge intervention models are needed to adequately anticipate and address post-discharge concerns related to stroke patients and their caregivers. These models should be based on a comprehensive assessment of the match between patient need and caregiver capacity and implemented prior to discharge from rehabilitation. This combined assessment of the stroke dyad is a necessary antecedent to intervention model development and testing. Stroke care clinical practice guidelines from several countries have identified the importance of conducting assessments of patients and caregivers early in the inpatient rehabilitation trajectory to determine patient needs and caregiver concerns and capacity however, no tools have been developed to fill this gap. The purpose of this mixed methods study is to develop and pilot a comprehensive dyad risk assessment profile for evaluating patient needs and caregiver concerns and capacity, and to determine the feasibility of implementing this risk assessment in a clinical setting. Implementing a risk assessment profile is the critical first step in developing stroke discharge intervention models and helping patients, spousal caregivers, and members of the rehabilitation team acquire a better understanding of the dyads' needs as they transition home from inpatient rehabilitation. PUBLIC HEALTH RELEVANCE: The long-term objective of this program of research is to develop a post-stroke discharge planning intervention that improves the health and lives of stroke survivors and spousal caregivers. The dyad risk assessment profile that is piloted in this study is the first step in this program and will be used in a future study to inform the development of a research-based intervention for stroke patients and their spousal caregivers as they transition home from inpatient rehabilitation. This proposal addresses the NINR strategic plan areas of emphasis related to improving quality of life and caregiving.