Perspectives of Mauritians Living with Neurological Disability and their Family Caregivers
In Press
Abstract
Background
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 34 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 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 COVID-19 lockdowns. Instead, shortages and rising price 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 causing high rates of caregiver burnout. We recommend patient-centric strategies at the grassroot, community, and national level to enhance accessibility, improve inclusivity, support caregivers, and reduce barriers to neurorehabilitation services.
Resources
Presentations
Living with disability in Mauritius?
National Stroke Awareness
National Stroke Awareness Mauritius (StrokeMU) is a nonprofit dedicated to raising stroke awareness, promoting prevention, and supporting survivors across Mauritius. It leads national campaigns—including radio, billboards, buses, social media, and bilingual educational materials—to highlight stroke risks, FAST signs, and prevention measures.
Disability Empowerment Unit
The Disability Empowerment Unit functions under the aegis of the Ministry of Social Integration, Social Security and National Solidarity. It is the “focal point” for disability issues in Mauritius. It provides information, counselling, guidance and referral services. It is also responsible for the conceptualization and implementation of disability policies, projects and programmes and facilitates the process of integration of persons with disabilities in mainstream society. Furthermore, it coordinates matters relating to the UN Convention on the Rights of Persons with Disabilities which Mauritius has signed in 2007 and ratified in 2010. Moreover, the Disability Empowerment Unit provides an array of direct services to persons with disabilities.
Association of Disability Service Providers
Association of Disability Service Providers (ADSP), founded in 2003 by Mrs. P. Ullagen on Royal Road, Long Mountain, Mauritius, is a registered non‑profit special education needs (SEN) school. It began as a daycare for five children with cerebral palsy and learning difficulties and now operates under Ministry of Education recognition (adspmauritius.com). ADSP offers multidisciplinary services—specialized teaching, therapy (occupational, speech, psychological), vocational training, and small‑group individualized education—supporting children and young adults with physical and intellectual impairments to promote autonomy and social inclusion (maubank.mu).