My A–T pack: a qualitative study of the utility, acceptability, design, and content of a family-designed and owned information pack relevant to the lives of children and young people living with ataxia telangiectasia
This study is an important contribution to the current understanding of the experiences of care and management of A-T from the point of view of children with A-T and their parents. Families with a child with A-T struggle with communication and information sharing across and between different professionals. My A-T Pack is a step towards providing families a viable resource for effective record keeping, symptoms management, and information sharing with relevant professionals involved in the care and management of their child's condition.
Authors
- William Whitehouse (ORCID: https://orcid.org/0000-0001-5207-5731)
- Amanda Wallace (ORCID: https://orcid.org/0000-0001-8743-8897)
- Elizabeth Cassidy (ORCID: https://orcid.org/0000-0002-8628-1063)
- Tracey Parkin (ORCID: https://orcid.org/0000-0002-7081-2253)
- Munira Khan (ORCID: https://orcid.org/0000-0003-2083-2106)
- Joanne Paton (ORCID: https://orcid.org/0000-0002-8833-3226)
- Bernie Carter (ORCID: https://orcid.org/0000-0001-5226-9878)
- James Munro (ORCID: https://orcid.org/0009-0002-6875-9876)
Institutions
- Edge Hill University (GB)
- King's College London (GB)
- Liverpool School of Tropical Medicine (GB)
- Cicely Saunders International (GB)
- University of Plymouth (GB)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-08-04
- DOI
- https://doi.org/10.1186/s13023-025-03919-6
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Action for A-T