“Just realising that I wasn’t alone… was profound”: a mixed-methods evaluation of a pilot peer-to-peer wellbeing program for carers of children with rare epilepsies
This pilot study supports the potential benefits of this flexible, online program on carer wellbeing and social inclusion. Larger controlled evaluations are needed to further investigate the program's impact over the short, medium and long-term, including potential enhancements to accommodate more diverse carers and in different settings.
Authors
- Raghu Lingam (ORCID: https://orcid.org/0000-0002-0161-793X)
- Jahidur Rahman Khan (ORCID: https://orcid.org/0000-0002-3029-6303)
- Erin Beavis
- Christopher O’Loughlin (ORCID: https://orcid.org/0000-0001-5930-3418)
- N Roberts (ORCID: https://orcid.org/0009-0000-9906-4589)
- Eden G. Robertson (ORCID: https://orcid.org/0000-0001-9395-7896)
- Elizabeth E. Palmer (ORCID: https://orcid.org/0000-0003-1844-215X)
- JOSEPH JOHN MURPHY (ORCID: https://orcid.org/0000-0003-4340-645X)
- Kristine Pierce (ORCID: https://orcid.org/0000-0003-2889-2381)
- Rebecca McIntosh
- Susan Bullock (ORCID: https://orcid.org/0009-0004-4732-3891)
- Megan Loden
Institutions
- UNSW Sydney (AU)
- Ducks Unlimited (US)
- Sydney Children’s Hospitals Network (AU)
- Orange County School (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-10-21
- DOI
- https://doi.org/10.1186/s13023-025-04036-0
- Primary Topic
- Epilepsy research and treatment
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Medical Research Council
- National Health and Medical Research Council