"I don't see anyone else like me" : creating an online community with parents of disabled children during Covid-19 : a thesis presented in partial fulfilment of the requirements for a Master of Design at Massey University, Wellington, New Zealand

Abstract

This project seeks to implement and reflect on the findings of co-design projects I have done with parents of disabled children over the past three years which identified isolation and lack of informal support as barriers to wellbeing. It explores the process of developing a parent-led online community to address these issues and identifies the challenges that could impact on the future success of the project. The aim of the online community, Awhi Ngā Mātua, is to empower parents of disabled children to lead positive change. This is a complex challenge that has used co-design to focus on clear intent, develop a technological solution, and guide visual design and content to create a community where parents find agency and belonging. Parents of disabled children are more likely to feel isolated and alone as they navigate their way through a complex health and education system, adjust to having a disabled child and manage the additional demands of parenting. There are many channels for parents to receive information and connect, but these lack intent, are driven by provider or contractural needs or are on platforms that make navigation difficult. Parents have unique needs based on their circumstance and the needs of their child. They need support and information that is relevant and timely. This research explores the potential for an online community to go beyond information provision and conversation threads towards developing parent confidence and ability to cope and the creation of a community that can advocate for social change. It recognises that technology has the power to contribute through tools that allow parents to interact and be part of building their community. The process of exploring the community approach was unexpectedly influenced by COVID-19 when a Facebook page (Awhi at Home) was quickly launched to support parents during lockdown. This became a prototype for Awhi Ngā Mātua, a place where I could experiment and develop a network of parents who were able to test ideas and approaches. I describe how this, combined with a review of literature and learnings from other online communities led to the development of a cohesive and value-based strategy for Awhi Ngā Mātua.