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Mapping experiences of PDA in Ireland

Year Published: 2022
Authors: Alison Doyle and Neil Kenny

This national study gathered insights from PDA individuals, their families, and professionals to understand knowledge, diagnosis, and support for PDA. Researchers surveyed 264 parents, 9 life partners, 6 PDA individuals, and 54 practitioners. They also conducted interviews and focus groups. The findings highlight the need for a flexible, informed, and personalised approach to assessing and supporting PDA individuals. Practitioners emphasised the importance of a streamlined, multi-disciplinary system. The study also found a major gap between education and healthcare services, calling for fairer access to support. Addressing these challenges could improve outcomes for individuals and families.

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