The development of an evidence-based resource to respond to the early information needs of families of children with disabilities

Alison Harnett

University College Dublin

Alison holds a B.Sc in Communications and is currently a doctoral candidate with the School of Psychology, University College Dublin, focusing on the early information needs of families of children with disabilities. She is also the Director of Policy with the National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability, which is the umbrella group of voluntary/non statutory intellectual disability service providers in Ireland. As part of this role, Alison coordinates a number of projects that support people with intellectual disabilities and their families. The Informing Families Project (www.informingfamilies.ie) developed evidence-based best practice guidelines and training for staff who inform families of the diagnosis of a child’s disability; currently being rolled out nationally in Ireland and a number of other countries. The Next Steps Project is a community of learning of 25 service providers developing individualized supports to enable people to live a life of their choosing.

Abstract

BACKGROUND Early information needs arise in the context of a family learning of their child’s diagnosis of disability, or when concerns arise about possible disability. An empirical literature review established the... [ view full abstract ]

Authors

  1. Alison Harnett (University College Dublin)
  2. Suzanne Guerin (University College Dublin)

Topic Area

Topics: Children's Healthcare

Session

CH2 » Children's Healthcare 2 (15:00 - Wednesday, 9th November, Seminar Room 0.30)

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