Young carers and ALS/MND: exploratory data from families in South Africa

Background: Amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) remains under-resourced across much of the world, including the global south. The lack of supports for ALS/MND is underscored, given the barriers to care, stigma associated, and need for intensive, 24-hour care, primarily provided by family, including vulnerable children and youth, 'young carers'. With little information of the care experience in ALS/MND in South Africa, this study sought to explore family characteristics and identify caregiving experiences and need of young carers in families living with ALS/MND. Methods: Using an exploratory mixed-methods approach, participants (N = 40) from 20 familes, were recruited from the two ALS/MND clinics in Cape Town and Johannesburg areas. Separate audiotaped interviews with adults living with ALS, adult caregivers and young carers were conducted. Findings: Young carers, both genders, ages 9–19, provided care up to 50 or more hours per week, including administering medications, toileting, and feeding the person with ALS/MND, with the majority reporting no training. Stigma, fear and lack of knowledge about ALS/MND limited how families discussed both ALS/MND and care provided by young carers. Families highlighted transportation barriers, and inconsistent access to care across regions. Parents identified emotional support, and in-home help to alleviate the burden of care on youth, acknowledging reliance on young carers due to cost of care. Young carers identified the need for education and people their age to talk to about ALS/MND. Conclusions: Results highlight the complex needs and interaction among families living with ALS/MND in South Africa. Data support the development of targeted support and education programs to address the need for culturally relevant interventions for families and their young carers living with ALS/MND.