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October 23, 2025Orphanet Journal of Rare DiseasesOpen Access

“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

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Authors

KPKristine PierceJMJOSEPH JOHN MURPHYEREden G. Robertson

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Overview

Mixed-methods evaluation shows improvements in social inclusion and quality of life for carers, suggesting benefits of wellbeing programs.

Key Points

  • Improvements in social inclusion and quality of life were observed among participants in the pilot study.
  • Nine out of ten participants rated the quality of the retreat as ‘Excellent’ while also noting its relevance to carers.
  • Pilot study utilized qualitative interviews alongside validated measures to assess outcomes, including self-efficacy and wellbeing.
  • This flexible online program highlights the importance of adequate support for caregivers, encouraging further research on its efficacy.],

Cite This Study

Pierce et al. (2025) studied this question.

synapsesocial.com/papers/68fa32a40df2e6cd2f74215chttps://doi.org/10.1186/s13023-025-04036-0
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