Exploring the feasibility, acceptability and potential impact of an ultra-brief online well-being programme for caregivers of children with tuberous sclerosis complex (TSC) in South Africa and the United Kingdom
Tuberous Sclerosis Association
University of Cape Town
Background. To date, very little attention has been given to the mental health and well-being of caregivers of children with disabilities and chronic conditions, including caregivers of children with tuberous sclerosis complex (TSC). Acceptance and commitment therapy (ACT) has shown promise in improving the well-being of caregivers of children with complex needs. Objectives. Our pilot study will explore the feasibility, acceptability, and potential impact of a 3-session online caregiver well-being programme (Well-Beans for Caregivers Programme). Methods. Local TSC organisations and advocates will review the programme materials and protocol before the study commences. The identified community hubs will also assist with the recruitment of caregivers of children with TSC (aged 2 to 11), living in either South Africa or the United Kingdom. The programme will be delivered online by two trained facilitators to a group of 10 caregivers and two observer trainees. The group will meet once a week for 3 weeks. Using an electronic data collection platform, feedback will be sought from caregivers, facilitators, and observers after each session. Additionally, caregivers will complete a set of wellness forms (pre-, post, and follow-up). All participants will join a focus group after programme completion. To increase the scientific rigour of the study, the programme will be delivered twice, with the second group acting as the waitlist control for the study. Outcomes. We will use various measures and focus groups to gather quantitative and qualitative data from multiple informants. This small scale study is an important first step in finding scalable and sustainable ways to support the well-being of caregivers with children with TSC. Importantly, it addresses the following identified gaps in TSC research: (1) research from a low/middle-income country, (2) non-pharmacological intervention research focused on caregiver wellness, (3) qualitative research, and (4) utilising technologies to increase the accessibility of support to families.
6.6 Psychological and behavioural