Barriers and facilitators to caring for individuals with stroke in the community: the family's experience

Abstract

Purpose: This project explored caregivers' perceptions regarding the barriers and facilitators to undertaking the post-stroke caregiving role, particularly as related to the health care system, with the ultimate goal of identifying potential strategies that would assist families in successfully undertaking the role.

Method: A qualitative study consisting of focus groups and individual interviews with caregivers of persons with stroke. Participants were asked about their needs in managing the care of their family member and the factors that facilitated and/or hindered the transition to the home and influenced them in maintaining their role.

Results: Information from 14 caregiver participants identified the following as primary barriers to undertaking and maintaining the caregiving role: lack of collaboration with the health care team, the intensity of the caregiving role, the negative impact on the caregiver, and the lack of community support for the caregiving role. Caregivers identified the following factors as facilitative: coordination of care, progress of the patient towards normalcy, mastery of the caregiving role, supportive social environment, and accessible community resources.

Discussion and conclusions: The results indicate there are facilitators that caregivers perceive as important both to undertaking and to sustaining the caregiving role. Consideration of these results in the design of interventions may lead to more effective interventions to support caregivers in undertaking and continuing in the caregiver role.