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ERIC Number: EJ1168535
Record Type: Journal
Publication Date: 2018-Mar
Pages: 12
Abstractor: As Provided
ISSN: ISSN-1360-2322
Whoever Shouts the Loudest: Listening to Parents of Children with Disabilities
Ryan, Christian; Quinlan, Elizabeth
Journal of Applied Research in Intellectual Disabilities, v31 suppl 2 p203-214 Mar 2018
Background: Elevated stress is common among parents of children with disabilities. The parents' perspective and evaluation of services have a significant impact on their well-being and adaptation to their child's disability and is a source of information for service improvements. This study explores parental perceptions of communication and collaboration between parents and health and education staff in the context of an imminent reconfiguration of disability services. Methods: A qualitative study was conducted using four focus groups with parents (n = 24) of children with disabilities who attend various educational and health services. Results: Thematic analysis revealed five key themes: "Us versus them," "lack of child/family centeredness," "resources," "keyworker" and "uncertain access to a complex system." Conclusions: Parents want greater collaboration between parents and professionals. They identified a keyworker as a potential solution to the current system that is not child-centred. This would also lessen the burden associated with high levels of advocacy.
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A