Methods: Using stroke as an exemplar, this presentation will combine findings from 2 grounded theory studies that focused on understanding the needs of stroke survivors and their family members as they moved through the stroke care trajectory. We interviewed 38 stroke patients and 41 family caregivers during inpatient rehabilitation and within 6 months post-discharge. Interviews focused on the impact of stroke and the perceived post-discharge needs and preferences of the stroke survivors and their family members. Data were analyzed using constant comparison and dimensional analysis. Two conceptual models were developed from the data analysis.
Findings: As stroke survivors and family members move through the stroke care trajectory their needs and preferences change. They move from the crisis of the stroke event to the hope of recovery to the crisis of discharge home and a beginning realization of how the aftermath of stroke may affect their lives long-term. The first model illustrates these experiences as stroke survivors and their family caregivers move through the stroke care trajectory from onset to inpatient care to home. Once discharged, family members often find themselves unprepared to assume the caregiver role, leaving them feeling isolated, abandoned, and alone. The second model focuses on the steps that are critical for assessing and addressing the post-stroke discharge needs of families as they transition home so they are better prepared to assume the caregiving role and adapt to their post-stroke lives.
Conclusions: In order to provide care that is family-centered, members of the inter-professional team need to understand the impact of stroke on the entire family. A comprehensive and systematic assessment should be conducted, not only of the patients’ needs post-stroke, but also of the capacity of the family members who will be providing care, to identify gaps between the patients’ needs and family members’ abilities to assume the caregiver role post-discharge. Using the findings from the assessment, health care professionals can better tailor treatment plans to address the specific needs and preferences of the family unit throughout the stroke care trajectory.