Assessing and Addressing the Needs of Stroke Survivors and Family Caregivers across the Care Continuum

Introduction: Patients who receive inpatient rehabilitation care have often experienced a sudden, life-changing disabling illness or injury that has long-term implications for the patient and family unit. An illness event (e.g. stroke) may elicit a crisis response, and feelings of grief and loss for both patients and family members. With improved survival rates and shorter inpatient stays for patients experiencing these events, family members are now assuming caregiving tasks that previously were only performed by formal caregivers, e.g. nurses and nursing assistants. Family members need assistance and support to help them deal with the event, make informed decisions about treatment, and assume their new roles and responsibilities. In order for family caregivers to successfully assume the caregiving roles and responsibilities post-discharge they need to be included and engaged in patient care discussions and treatment decisions throughout the care trajectory. Understanding the family dynamics, and assessing and addressing family members’ needs, preferences, and readiness to assume the caregiving role post-discharge is critical for the long-term health the patient and family unit. The purpose of this presentation is to improve understanding of how to assess and address the post-discharge needs of stroke survivors and their family caregivers.

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.