140 Session 9
Advancing Comprehensive Early Childhood Intervention
Papers Topic - Involving Families in Service Delivery
P9.03 Co-Designing Accessible Information Resources With and for Families: Does it Work?
Presenting Author: Christine Johnston (Australia) Affiliation: Western Sydney University, Australia Co-Authors: Matthew Breaden, Kerry Dominish, John Forster, Danielle Tracey
P9.04 Empowering Families of Young Children From the Start: Impact on Family Well-Being in Public Services for Developmental Disorders - Insights From E-PAtS Program Adaptations in Quebec and Switzerland Presenting Author: Marie-Annick Lussier (Canada) Affiliation: University of Quebec in Montreal Co-Authors: Mélina Rivard, Céline Chatenoud, Mélina Boulé, Julie Turgeon, Jill Bradshaw, Nick Gore, Richard Hastings, Diane Morin, Nadia Abouzeid, Marie Millau Parental intervention plays a crucial role in enhancing family well-being, particularly when developmental and social challenges are heightened as is the case for children with developmental disorders such as autism and intellectual disabilities. It provides essential support during the services’ trajectory during early years, including diagnosis, access to specialized interventions, and the transition to school. The success of these interventions depends not only on content but also on how support is delivered, combining informational, coaching, and emotional assistance to foster family adaptation. The E-PAtS program, developed and validated in the United Kingdom (Gore et al., 2022), consists of eight group therapy sessions co-facilitated by a parent and a professional. Adapted for Quebec (Canada) and Switzerland, this program has been implemented and evaluated in public health and social service agencies to help service providers build capacity and access resources for families, particularly where support is lacking, such as in family caregivers’ health support. This communication will present data from interviews with over 50 families (Qc and CH), facilitators, and administrators, highlighting the pivotal role of the parent facilitator in fostering family engagement and promoting positive outcomes for children through E-PAtS. P9.05 What Parents Tell Us: Experiences and Needs Related to Disclosure of a Cerebral Palsy Diagnosis of Their Child Presenting Author: Marjolijn Ketelaar (Netherlands) Affiliation: UMC Utrecht and De Hoogstraat Rehabilitation, Netherlands Co-Authors: Jet van der Kemp, Ingrid Rentinck, Marike Willems, Jan Willem Gorter, Marion Sommers-Spijkerman, Manon Benders Learning that your child has cerebral palsy (CP) is often an overwhelming and distressing experience for parents. In a study performed in close collaboration with parents and the patient association, CPNetherlands, we aim to get insight in parents' experiences and needs regarding communication during disclosure of the diagnosis of their child. We performed a literature review and interviewed parents to hear their personal stories to provide recommendations for health care professionals and to co-develop tools to support families and health care professionals. Interviews were analyzed using qualitative thematic analysis. Based on the literature, several themes related to experiences and needs were identified. Overall, the study highlighted the importance of: (1) clear and honest information; (2) strong communication skills; and (3) emotional and practical support following the diagnosis. In the presentation, results of the interviews will be presented in the context of the findings of the literature review. Families with children with disabilities across the world consistently point to their need for information that can be trusted. The Living Well with Global Developmental Delay (GDD) Project has worked to achieve this through co-design. The project team comprises a working group of 6 family members living with GDD, the lead team of 6 researchers and service providers, and the web designer. While the development of an evidence-based, accessible website to assist families living with GDD in their decision making was the prime objective, it also allowed an ongoing examination of the efficacy of co-design and its impact. Our research findings (using interviews, focus groups, and SEO data) indicate that the approach taken was effective and has led to resources that are more targeted and accessible than might otherwise have been the case.
Made with FlippingBook - professional solution for displaying marketing and sales documents online