Designing an online community with parents of disabled children

Ms Elizabeth Goodwin1

1Connect+Co/IHC, Wellington, New Zealand

Background
Parents of disabled children experience isolation from informal support that impacts negatively on their wellbeing and ability to cope. The development of an online community to address this is the result of a co-design process with parents.

Method
Co-design included interviews with parents of children with intellectual disabilities, prototyping through a Facebook page launched during the COVID-19 lockdown and ongoing testing with parents, who are also involved in wider decision-making and content development.

Results
The key result of the project is the development of an online community that combines social connection with evidence-based information on the same platform. We are building the ability to measure impact into the development of the platform; this will include the collection of data such as active users, connections made and feedback on how information and connection contributed to wellbeing. We are initially targeting parents of younger children with disabilities and high health needs.

Implications
My research found that the combination of social connection and information is an emerging requirement in the online space. There are many tools that do one of these, but not both. This has led to us building our own platform which will be open source and has the potential to serve other communities.

Awhi Ngā Mātua has the potential to create an online community that addresses the complexity of parent wellbeing through the protective factors of social connection and sharing of practical information.


Biography:

Elizabeth Goodwin has been involved in disability since the diagnosis of her daughter Jessica over 35 years ago. She has been an activist, volunteer and employee in the sector and is currently a researcher and co-designer.