The impact of providing care for stroke survivors on caregiver health and wellbeing: Developing stronger support mechanisms

Background: Informal caregivers (i.e., individuals who provide unpaid care to a family member and/or friend) have a significant role in supporting the recovery and wellbeing of stroke survivors. To ensure adequate and effective support, caregivers must also attend to their health and wellbeing. Therefore, research is needed to understand the experiences of informal stroke caregivers to better support their wellbeing and inform intervention development. Objective: To understand the experiences of informal stroke caregivers on the impact of caring on caregiver health and wellbeing, and to make recommendations to inform the development of a program to better support caregivers. Methods: A mixed-methods convergent design was used to understand caregiver experiences. Semi-structured interviews were conducted with 10 informal stroke caregivers in Sydney, Australia, and data were analysed using inductive thematic analysis. The Occupational Gaps Questionnaire was also administered to participants to explore activity incongruence. Results: All participants identified occupational gaps (range 7–15). Three major themes were identified from interviews: Complexities of caring, Looking after yourself, and Life changes with caring. All caregivers discussed the impact of caregiving on their identity and ability to participate in meaningful activities. Caregivers suggested the importance of developing coping strategies such as engaging in healthy behaviours and prioritising important activities. Participants identified the need for individualised support and education to assist with maintaining the caregiving role. Conclusions: The caring role can significantly impact on caregiver identity and their ability to engage in meaningful activity. To further support caregivers, future interventions should consider tailored education and individual support.