Year: 2024
Author: Danielle Tracey, Christine Johnston, Kerry Dominish, John Forster, Tim Moore, Matthew Breaden
Type of paper: Individual Paper
Abstract:
With 1 – 3% of children under the age of five years having Global Developmental Delay (GDD) (Levy et al., 2011); its impact on individuals, families, and communities is considerable. Families with children with disabilities consistently emphasise their need for information (e.g., Al-Kandari, 2014; Brown et al., 2012; Dew et al., 2013), with the internet positioned as a major source of information (Johnston, Tracey et al., 2013). More specifically, Australia-wide research found that parents want information that is easily accessible, jargon free, in multiple formats, unbiased, evidence-based and delivered by both experienced professionals and other families and individuals in similar situations (Johnston, Tracey, et al., 2013; Tracey, Johnston, et al., 2018).
This project (funded as an Information Linkages and Capacity grant) developed the Living Well with Global Developmental Delay website https://globaldevelopmentaldelay.com.au/ to deliver online resources for both individuals living with GDD and their families that increases knowledge about GDD, enables skill development, and builds capacity for decision making. A new research-informed module supports the enhancement of family wellbeing through user reflection and application to their daily life.
The presentation will describe and critique two central components of the project: the co-design process, and the research framework adopted to produce and continually improve the resource. A design group has driven the project and comprises a working group of six family members living with GDD, and a team of six researchers and service providers and the web designer. The effectiveness of the co-design model was assessed via quantitative and qualitative approaches, informing future best-practice in co-design methodology. In addition, beyond the available user data via search engine optimisation (SEO) reports, focus groups have been conducted with potential users from a range of culturally and linguistically diverse backgrounds, using an interpreter where needed, to identify the relevance and utility of the resource and embedded accessibility and translation tools.
The design of the website and the ongoing embedded research framework yields new knowledge about co-design approaches; the needs of families and individuals living with GDD; and the acceptability and effectiveness of the resources and modules themselves. These insights have the potential to develop researchers and practitioners’ understanding of not only what information and support families with children with GDD seek, but also how to best meet such needs.
This project (funded as an Information Linkages and Capacity grant) developed the Living Well with Global Developmental Delay website https://globaldevelopmentaldelay.com.au/ to deliver online resources for both individuals living with GDD and their families that increases knowledge about GDD, enables skill development, and builds capacity for decision making. A new research-informed module supports the enhancement of family wellbeing through user reflection and application to their daily life.
The presentation will describe and critique two central components of the project: the co-design process, and the research framework adopted to produce and continually improve the resource. A design group has driven the project and comprises a working group of six family members living with GDD, and a team of six researchers and service providers and the web designer. The effectiveness of the co-design model was assessed via quantitative and qualitative approaches, informing future best-practice in co-design methodology. In addition, beyond the available user data via search engine optimisation (SEO) reports, focus groups have been conducted with potential users from a range of culturally and linguistically diverse backgrounds, using an interpreter where needed, to identify the relevance and utility of the resource and embedded accessibility and translation tools.
The design of the website and the ongoing embedded research framework yields new knowledge about co-design approaches; the needs of families and individuals living with GDD; and the acceptability and effectiveness of the resources and modules themselves. These insights have the potential to develop researchers and practitioners’ understanding of not only what information and support families with children with GDD seek, but also how to best meet such needs.