Perspectives of Mauritians living with neurological disability and their family caregivers during the COVID-19 lockdown: a thematic analysis from an African nation

毛里求斯神经系统残疾患者及其家庭照护者在新冠疫情封锁期间的视角:来自一个非洲国家的专题分析

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Abstract

INTRODUCTION: Mauritians living with neurological disability face limited medical care, accessibility issues, and cultural stigma, which prevent community reintegration. We aimed to investigate the perspectives of Mauritians with neurological disability and their family caregivers during COVID-19 lockdown. METHODS: following a phenomenological epistemology, this qualitative study employed an inductive reflexive thematic analysis of semi-structured interviews with neurorehabilitation patients (N=18) and their primary caregivers (N=22). Patients with stroke (N=22), spinal cord injury (N=11), and traumatic brain injury (N=1) were included, excluding those who did not experience cognitive and/or physical disability. RESULTS: the analysis developed six themes: (1) caregiver burnout: "I do everything"; (2) barriers to treatment: "the kind of care we get"; (3) poor social support: the disability taboo; (4) geographical barriers: a world not built for you; (5) financial burden: "sinking us into a hole"; and (6) isolation: a double-sided coin. Unexpectedly, lockdowns benefitted socially isolated patients, resulting in strengthened familial bonds, subjective gains in recovery, fewer experiences of stigma, and reduced fatigue. Rehabilitation care is limited, and patients lose motivation to pursue medical care. As a result, medical care was not highly affected by the COVID-19 lockdowns. Instead, shortages and rising prices of medication posed issues. CONCLUSION: the widespread lack of resources for patients on financial, rehabilitation, and social levels prevents patient return to the community and causes high rates of caregiver burnout. We recommend patient-centric strategies at the grassroots, community, and national levels to enhance accessibility, improve inclusivity, support caregivers, and reduce barriers to neurorehabilitation services.

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