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 ]
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 importance of early information to families of children with disabilities; revealed unmet need for early information; and found a lack of evidence-based guidance to professionals in how to develop information materials or meet early information needs.
AIMS AND OBJECTIVES
To develop an evidence-based information resource useful to families at the time of diagnosis of their child’s disability, and through the development process to contribute to research on evidence-based processes for information provision.
METHOD
An action-research design was employed to develop an information resource through consultation with key informants (including state agencies, family members and professionals) and key actors (including families and professionals), based on criteria from evidence-based best practice disclosure guidelines developed earlier. Qualitative data (meeting minutes, emails, notes, documents and graphics) were gathered, analysed and assembled into components by the author as the development took place. Ethical exemption for the analysis of the anonymised qualitative data was granted by the Research Ethics Committee of the author’s institution.
FINDINGS
A four-component process (consultation; initial resource development; review and publication; and translation) provided a national website in 7 languages currently accessed by an average of 1300 users per month. Key findings included the importance in the process of appropriate tone, accuracy of content, plain English, and culturally appropriate materials.
CONCLUSIONS AND IMPLICATIONS
The findings of the study suggest it is possible to employ evidence-based methods to develop early information resources for families of children with disabilities. The process outlined contributes to research in this area and provides steps that can be replicated to assess the reliability of the methods.
Authors
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Alison Harnett
(University College Dublin)
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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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