Family Caregivers’ Experiences and Coping Strategies in Managing Stroke Patients during the COVID-19 Pandemic: A Qualitative Exploration Study

Abstract

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.

Palliative Care Needs Among Jordanian Women Living with Stroke: A Descriptive Phenomenological Study

“…One of the most critical issues revealed by this study is what the participants reported about their feeling of burden on their family and their sense of burden caused as a result of their total or partial dependence on their families to help in accomplishing daily tasks, in addition to increasing the nancial burden on them. This is consistent with the results of previous studies where participants reported similar concerns [28,29].…”

Estimating the Burden Among Informal Caregivers of Stroke Survivors in East Coast Peninsular Malaysia: A Short-Term Longitudinal Study

“…Even worse, some caregivers may feel abandoned if there is a lack of supports -financial, emotional, and social support [14,42]. Lack of access to patient care services may also contribute to the burden, whether the caregiver is unable to bring the patient due to lack of time, money, or logistics, or the services that were required by the patients or the caregivers were not available [7,12,42]. If the caregiver's burden is not dealt with appropriately, it may progress to other issues such as poor quality of life, anxiety, and depression [4,6,8,33].…”

“…Individualised regimes tailored to the needs of patients and the caregivers were more preferable, but lack of resources may limit some care providers to only delivering "one-size-fits-all" interventions [14,45]. Care providers should be aware of the availability of other types of support services available for the patients and their caregivers, including social, financial and spiritual support, both from government and non-governmental organisations [5,7,12].…”

“…A sense of responsibility was a significant motivation, and seeing stroke survivors recover is usually considered rewarding. Some caregivers also perceive their relationship with the patients as more intimate despite the unfortunate mishap [5,7,12].…”

A Scoping Review of Recent Advancements in Intervention and Outcome Measures for Post-Stroke Cognitive Impairments

“…[ 9 ] However, very little importance and lack of awareness exist among stroke rehabilitation experts, and the stroke survivors and their families for effective cognitive rehabilitation, respectively. [ 10 ] Cognitive impairments are also so complex in its presentation, implying that not one single interventional approach and its impact on the outcomes are sufficient to enhance functional recovery. Therefore, post-stroke cognitive rehabilitation includes a wide variety of interventions, approaches, and outcome measures to enable functional independence among those affected.…”