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

Muhammad Iqbal Haji Mukhti,Kamarul Imran Musa,Sureshkumar Kamalakannan,Iliatha Papachristou Nadal,Tengku Alina Tengku Ismail,Sanjay Kinra,Mohd Ismail Ibrahim

doi:10.3390/ijerph19020942

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.

Highlights

Non-communicable illnesses accounted for seven of the ten major causes of death globally in 2019, with stroke coming in second [1]
We gained a better understanding and a clearer picture of what happened during the COVID-19 pandemic
The pre-existing issues involving social life, formal duty, and appointment schedule worsened with the pandemic, whereas the emergence of new issues experienced could be summarized mostly due to the implementation of control measures, especially regarding the travel restrictive measures, the execution of Standard Operating Procedure (SOP), the adaptation made by health sectors, and the chain effects of the pandemic upon external determinants that eventually affected the caregivers

Summary

Introduction

Non-communicable illnesses accounted for seven of the ten major causes of death globally in 2019, with stroke coming in second [1]. The same trend was observed in upper and upper-middle-income countries [1]. 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. This study aims to explore the burden, experience, and coping mechanism of the family caregivers supporting stroke survivors during the COVID-19 pandemic

Objectives

Discussion

Conclusion