Introduction:
More than 3.5 million family caregivers provide assistance with activities and instrumental activities of daily living for stroke survivors living at home. Studies consistently indicate that stroke family caregivers are inadequately assessed and under prepared for their new caregiver roles and responsibilities as stroke survivors transition home from inpatient rehabilitation. Several tools exist to assess caregivers once they have assumed the caregiving role, however, there are no tools assess stroke caregiver readiness prior to discharge. Research has indicated the need for a thorough and systematic pre-discharge assessment of the caregiver’s ability to assume the caregiving role. The purpose of this presentation is to describe ten critical stroke caregiver readiness assessment domains and to discuss their relevance for long-term outcomes for stroke survivors and family caregivers.
Methods:
In this grounded theory study, data were collected from19 persons with stroke and 19 family caregivers. Semi-structured interviews were conducted during inpatient rehabilitation and within 6 months post-discharge. First interviews focused on expectations for recovery and caregiving needs post-discharge. Follow-up interviews focused on how families managed the transition from rehabilitation to home and how their initial expectations matched the reality of their post-discharge experience. Interviews were analyzed using dimensional analysis and coded in NVivo data management software.
Findings:
Participants indicated that stroke was an overwhelming, life changing crisis event. Family members felt abandoned, isolated, and under prepared to assume the fulltime caregiving role as stroke survivors transitioned home. They described using ineffective or risky caregiving strategies that resulted in safety and health issues for both stroke survivors and caregivers. Ten pre-discharge caregiver readiness assessment domains were identified in the interviews and a corresponding stroke caregiver readiness assessment interview guide was developed.
Conclusion:
Stroke survivors and family caregivers are extremely vulnerable as they transition home from inpatient rehabilitation leaving them at risk for poorer health, depression, and increased risk for injury. In order to prevent these deleterious outcomes, caregivers should be assessed, and potential areas of risk identified and addressed prior to discharge from inpatient rehabilitation. As new interventions are developed to improve survival rates for persons with stroke, we must also develop and implement primary prevention strategies for family members who are called upon to provide care following discharge to protect their health and improve the long-term recovery outcomes for the stroke survivor.
