Background: Stroke is a chronic disease that requires stroke survivors to be supported long-term by their families. This is especially because of the inaccessibility to post-stroke rehabilitation outside hospitals. The Corona Virus Disease 2019 (COVID-19) crisis and the pandemic restrictions in Malaysia are expected to exponentially increase the demand from family caregivers in supporting stroke survivors. Thus, this study aims to explore the burden, experience, and coping mechanism of the family caregivers supporting stroke survivors during the COVID-19 pandemic.
Methodology: A phenomenological qualitative study was conducted from November 2020 to June 2021 in Malaysia. A total of 13 respondents were recruited from two public rehabilitation centers in Kota Bharu, Kelantan. In-depth interviews were conducted with the participants. Comprehensive representation of perspectives from the respondents was achieved through purposive sampling. The interviews were conducted in the Kelantanese dialect, recorded, transcribed, and analyzed using thematic analysis.
Results: Three themes on burdens and experiences were identified. They were worsening pre-existing issues, emerging new issues, and fewer burdens and challenges. Two themes on coping strategies were also identified. They were problem-focused engagement and emotion-focused engagement.
Conclusions: The COVID-19 pandemic has changed the entire system of stroke management. While family caregivers mostly faced the extra burden through different experiences, they also encountered some positive impacts from the pandemic. The integrated healthcare system, especially in the era of digitalization, is an important element to establish the collaborative commitment of multiple stakeholders to compensate burden and sustain the healthcare of stroke survivors during the pandemic.
Keywords: COVID-19 pandemic; burdens; coping strategies; experiences; family caregivers; public rehabilitation centers; stroke.