Purpose Approximately 4.8 million stroke survivors are living in the community with some level of disability requiring the assistance of family caregivers. Stroke family caregivers are often unprepared for the demands required of them. The purpose of this grounded theory study was to explore the needs of stroke patients and their family caregivers as they transitioned through the stroke care continuum from acute care to inpatient rehabilitation to home. Methods Thirty-eight participants, 19 recovering stroke patients (11 male, 8 female), 15 primary family caregivers (14 spouses, 1 mother), and 4 adult children were interviewed during their stay at a rehabilitation facility and within 6 months of discharge. Interview questions were loosely structured and focused on the stroke experience and how patients and caregivers were managing postdischarge. Data were analyzed using dimensional and comparative analysis. Results Findings were organized in a conceptual framework illustrating the trajectory of the crisis of stroke. Stroke survivors and their caregivers faced enormous challenges as they moved through 3 phases of the trajectory: the stroke crisis, expectations for recovery, and the crisis of discharge. Findings from this study suggest that as caregivers move through the phases of the trajectory, they do not have a good understanding of the role to which they are committing, and they are often underprepared to take on even the basic tasks to meet the patients’ needs on discharge. Conclusion Stroke survivors and their caregivers do not have adequate time to deal with the shock and crisis of the stroke event, let alone the crisis of discharge and all of the new responsibilities with which they must deal.

The model presented provides a family-centered approach for identifying needs and facilitating caregiver preparation. Given recent focus on improving care coordination, care transitions, and patient-centered care to help improve patient safety and reduce readmissions in this population, this research provides a new approach to enhance these outcomes among stroke survivors with family caregivers.

Purpose Preparation for caregiving is improved through engaged interactions between stroke family caregivers and healthcare providers throughout the care trajectory. We explored caregivers’ perceptions about interactions with providers in rehabilitation, and how these experiences affected caregiver preparation. Design Seventeen caregivers, included in this grounded theory study, were interviewed during a rehabilitation stay and post-discharge. Data were analyzed using dimensional and comparative analysis. Findings Caregivers described interactions with providers on a continuum from collaborative to disconnected, and a range of strategies to enhance interactions. Conclusions Caregivers want to be actively engaged with providers during inpatient rehabilitation and collaborative interactions enhance preparedness and care satisfaction. Relevance Family members should be assessed for caregiving capacity and interactions between providers and caregivers should be individualized to specific needs. Providers must also be aware that many caregivers are not active information seekers. They must engage caregivers who may not even know what questions to ask.

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