Global Developmental Delay (GDD) is both a devastating and a confusing diagnosis for families; not least because the word “delay” suggests that this condition may be temporary, that the child may catch up through targeted intervention and that, as a consequence, expected developmental milestones will eventually be reached. The confusion is compounded by the fact that, while GDD may be caused by chromosomal or genetic abnormalities, in many cases the underlying cause is never identified (American Psychiatric Association, 2022). Furthermore, although estimates vary, it is generally accepted that between 1 – 3% of children under the age of five years have GDD (Levy et al., 2011); its impact is therefore considerable especially when the effects on families and communities are also considered.

It is not surprising, then, that families with children with disabilities consistently point to their need for information: a finding that has been reported in a range of countries (e.g., Canada: Brown et al., 2012; Kuwait: Al-Kandari, 2014; and Australia: Dew et al., 2013).  Since they also see the internet as a major source of information (Johnston, Tracey et al., 2013), a desktop audit of existing websites on GDD available internationally was conducted and revealed that most offer only written materials of a very general nature and often encourage a particular approach to intervention conducted by the site host. Detailed, easily accessible information that is evidence-based is lacking. Australia-wide research on the information needs of parents 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). They want information that enables their decision-making not only around intervention for their child with GDD but for their family as a whole. This finding is not Australia-centric but applicable around the world.

The objective of the Living Well with Global Developmental Delay project is therefore to develop a website that delivers online resources for both individuals living with GDD and their families and that meets three kinds of needs: increasing knowledge about GDD through both information about the disability and through those living with GDD recounting their experiences at critical points in their journeys; enabling skill development (supporting children’s development; Daily Living Skills) and building capacity for participation and decision making through interactive opportunities for self-reflection that lead to personal meaning and action.

The project pedagogy is based on adult education principles and more specifically transformative learning theory (Mezirow, 1991). As a consequence, these resources are distinguished from those currently available by the depth and nature of the content and, most importantly, by their being co-designed with family members living with GDD.

Furthermore, the project has a strong research component addressing three main questions:

1. What are the parents’ perspectives on their roles in the project? 
2. What impact has co-design had on the outcomes achieved? 
3. How relevant, accessible and useful are the resources for families and other stakeholders from a range of socio-economic and culturally and linguistically diverse backgrounds?

The project is continuing with further resource development and evaluation planned. The website can be found at https://globaldevelopmentaldelay.com.au/

Central to the project is a commitment to co-design. To achieve this, a design group has driven the project and comprises a working group of six family members living with GDD, the lead team of six researchers and service providers and the web designer. A meeting protocol was established at the beginning of the project to ensure that the voices of the family members are heard and acted upon. Their expertise is further acknowledged through their being paid an honorarium for meeting attendance and any work they undertake evaluating drafts of the resources, contributing blogs or participating in videos. The project has applied Scheirer’s (2012) systematic program life cycle where implementation sustainability and evaluation are embedded to promote the longevity of program impact. Firstly, the ongoing meetings of the Design Group guide not only the content and pedagogical design but project renewal. Secondly, the initial literature reviews underpinning curriculum and pedagogical design are being updated throughout the project. Thirdly, evaluation is an integral component of the program design with data from program users being continually gathered and used to initiate improvements. The project has thus been characterised by its having an ongoing and strong research focus. For example, in order to determine the effectiveness of the co-design model used, a research assistant, external to the project, was engaged to gather data on the parents’ perspectives of co-design through a short questionnaire and semi-structured interviews. This ensured confidentiality and anonymity with the researchers having access to deidentified data only. The minutes of the meetings held throughout the project’s first two years were also analysed to identify the nature and extent of input from the parents. Their input was then mapped against the resources developed during that period. In addition, focus groups have been conducted with potential users of the website from a range of culturally and linguistically diverse backgrounds. Using an interpreter where needed, the relevance of the resources and the effectiveness of the accessibility and translation tools included on the site have been evaluated and changes made as necessary. The translation tool which offers both spoken and written options was seen as accurate and enhancing their access to trustworthy information. These focus groups also provided enabled those living with GDD to suggest other resources that would be useful. This iterative approach ensures the relevance of the content (curriculum) and the effectiveness of the ways in which it is presented (pedagogy).

This project can be seen as having two main outcomes; one product oriented, the other research driven. The two are, however, intertwined. The development of an evidence-based, accessible website for families living with GDD has been the focus guiding the conceptualisation, implementation and evaluation of the project. More specifically, the project will achieve the following: those living with global developmental delay are connected and have the information they need to make decisions and choices for their child and family. The embedded and ongoing evaluation will produce new knowledge about the needs of parents and individuals living with GDD together with the acceptability and effectiveness of the resources and modules themselves. Regular search engine optimisation (SEO) reports also point not only to its use but give data on how, when and where the resources are accessed. These insights will enable more targeted resource development. Most importantly, the methodology adopted allows an ongoing examination of the efficacy of co-design and its impact. Our findings to date indicate that our working group of parents were positive in their response to the co-design approach adopted. They reported their motivation to be involved as largely coming from their wanting other families to have easy access to information; something they had not experienced. The difficulties of juggling family and other commitments to enable continued engagement in the project were also pointed to. Finally, co-design was found to have led to resources that were more targeted and accessible than might otherwise have been the case. While some of the information resources and modules are specific to the Australian funding context, much is relevant to families across the world and provides insights into how best to meet the information needs of families.

Al-Kandari, H. Y. (2014) ‘Parents’ and professionals’ perceptions of the services of families of children with intellectual developmental disabilities.’ Adolescence Social Work Journal, 31, pp. 119–42. DOI:10.1007/s10560-013-0314-4 American Psychiatric Association (2022). Diagnostic and statistical manual of mental disorders: DSM-5-TR (Fifth edition, text revision.). American Psychiatric Association Publishing. Brown, H. K., Ouellette-Kuntz, H., Hunter, D., Kelley, E. & Cobigo, V. (2012) ‘Unmet needs of families of school-aged children with an autism spectrum disorder.’ Journal of Applied Research in Intellectual Disabilities, 25 (6), pp. 497–508. Dew, A., Bulkeley, K., Veitch, C., Bundy, A., Lincoln, M., Brentnall, J., Gallego, G. & Griffiths, S. (2013) ‘Carer and service providers’ experiences of individual funding models for children with a disability in rural and remote areas.’ Health & Social Care in the Community, 21 (4), pp. 432–41. DOI: 10.1111/hsc.12032 Johnston, C., Tracey, D., Mahmic, S. & Papps, F. (2013). Getting the Best from DisabilityCare Australia: Families, Information and Decision Making: Report of a Project Undertaken for the Practical Design Fund Department of Families, Housing, Community Services and Indigenous Affairs, Practical Design Fund (Australian Department of Families, Ho0using, Community Services and Indigenous Affairs), [ORS ID: 235512] Levy, Y., Ornoy, A. and Nevo, Y. (2011). Special issue on developmental delay. Developmental Disabilities Research Reviews, 17 (2), 57–58. doi: 10.1002/ddrr.1100 Mezirow, J. (1991). Transformative Dimensions of Adult Learning. Jossey-Bass. doi.org/10.1177/074171369204200309 Sheirer, M.A. (2012). Planning Evaluation Through the Program Life Cycle. American Journal of Evaluation, 33 (2), 263-294. doi.org/10.1177/1098214011434609 Tracey, D., Johnston, C., Papps, F. & Mahmic, S. (2018). How do parents acquire information to support their child with a disability and navigate individualised funding schemes? Journal of Research in Special Education Needs, vol 18, no 1, pp 25-35. doi: 10.1111/1471-3802.12390