ANGEL AID Caregiver Wellness Retreat

Genetic epilepsies represent the most severe epilepsies. Children with a genetic epilepsy often experience chronic neurocognitive impairment and/or regression with a high risk of premature death. As each genetic epilepsy is a rare disease most caregivers face difficulty accessing advocacy groups that could typically bring connection and support through shared experience. Caregivers of a child with a rare genetic epilepsy experience considerable stress and are at an increased risk of poor mental health, decreased quality of life and reduced emotional well-being. Research indicates that over a half of these caregivers are at heightened risk of depression and anxiety. Poor health status of caregivers can consequently negatively impact the health of the child.

ANGEL AID is a not-for-profit organisation which conducts wellness programs to improve coping skills for caregivers that will help maintain their daily mental and emotional health. ANGEL AID also provides caregivers with access to a wider support network. Child UnLTD has partnered with ANGEL AID to design and evaluate a pilot wellness retreat program in the Australian context. The evaluation will assess feasibility and acceptability as well as caregiver’s self-reported wellbeing, self-efficacy and social connectedness.

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