Whoever shouts the loudest: Listening to parents of children with disabilities

Abstract

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.

Keywords: advocacy; disabilities; identity; keyworker; parental stress; parents.