ABSTRACT

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.

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.

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.

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.

摘要

肌萎缩性侧索硬化/运动神经元疾病（ALS / MND）在世界许多地区（包括全球南部）仍然资源不足。考虑到照顾障碍，与之相关的污名以及对主要由家庭（包括弱势儿童和青年，“年轻护老者”）提供的密集24小时护理的需求，强调了对ALS / MND缺乏支持的情况。在缺乏有关ALS / MND的南非护理经验的信息的情况下，本研究试图探索家庭特征，并确定在ALS / MND的家庭中的护理经验和年轻护理人员的需求。

使用探索性的混合方法，从开普敦和约翰内斯堡地区的两家ALS / MND诊所招募了20个家庭的参与者（N = 40）。对患有ALS的成人，成人看护者和年轻看护者进行了单独的录音采访。

年龄介于9至19岁之间的男女年轻人，每周提供长达50个小时或更长时间的护理，包括给药，上厕所和为ALS / MND喂养人，大多数报告没有接受过培训。污名，恐惧和对ALS / MND的了解不足限制了家庭如何讨论ALS / MND和年轻护老者提供的护理。家庭突显了交通障碍，跨地区获得医疗服务的方式不一致。父母意识到了情感上的支持，并在家庭中减轻了照顾年轻人的负担，并承认由于照顾费用而依赖年轻的看护者。年轻的看护者确定了教育的需求，并且同年龄的人谈论ALS / MND。

结果突显了南非患有ALS / MND的家庭的复杂需求和互动。数据支持制定有针对性的支持和教育计划，以解决对生活在ALS / MND中的家庭及其年轻护老者的文化干预措施的需求。