Challenges among informal caregivers of people living with motor neuron disease in South Africa

Background: Motor neuron disease (MND) is a progressive and fatal neurodegenerative condition that is increasingly impacting individuals and their families globally. Despite being relatively rare, prevalence is rising because of an ageing population, with significant socio-economic consequences, particularly in countries with fragmented healthcare systems, financial challenges, and limited resources and skills. Family members often assume the caregiving role, leading to substantial caregiver burden in a context where support is lacking. Objectives: Against this backdrop and given the scarcity of research on MND within South African communities, this study aimed to investigate the challenges experienced by caregivers of individuals with MND. Method: We adopted an exploratory and qualitative approach to gain an in-depth understanding of lived experiences. Semi-structured interviews were conducted with 17 informal caregivers of MND patients across South Africa. Results: The data, transcribed and analysed using thematic analysis, revealed insights into caregiver burden. The objective burdens were physical and financial strain, the impact on caregivers’ social environments, and difficulties with healthcare services. The subjective burdens were perceived loss of love and self, guilt, and emotional impact. Conclusion: These findings underscore the profound emotional, social, physical and financial burden of informal caregiving for individuals with MND, and highlight the urgent need for improved support systems, policy responses and greater societal awareness. Contribution: There is a need for further research focused on intervention development and policy reform to alleviate caregiver burden and enhance support services, grounded in caregivers’ lived experiences.