Livewire - connecting chronically ill youth across the country

Since 2008, an online community has provided a safe space for social interaction and self-expression for thousands of 12 to 20-year olds who are living with a chronic health condition and/or disability, no matter where they live.

Adolescence is a period of rapid physical, psychological, cognitive, emotional and social development. Having a chronic health condition and/or disability can severely compromise this trajectory. Young people in this situation have increased risks of experiencing negative psychosocial outcomes such as lower overall life satisfaction, poorer mental health, and lower self-efficacy. For adolescents in rural or regional areas, the isolation can be further compounded by a lack of peers with similar experiences, and the limited availability of, or access to, support services.

Starlight’s Livewire online community
The Starlight Children’s Foundation (Starlight) delivers programs in partnership with health professionals, to support children, adolescents and their families who are living with a serious illness, disability or health condition. After recognising the unique and unmet psychosocial needs of adolescents (and their siblings) in this situation and identifying a gap in the availability of online peer support programs, Starlight’s Livewire program  was established in 2008. The online community is an actively moderated, safe and secure space that is accessible to those at home or in hospital, available when they need it, utilising a form of communication commonly used by young people.

The online community was designed to connect peers who understand the complexity of living with chronic health conditions and to promote the voice of lived experience through live chat, private messaging, information provision, community and entertainment content, projects, and blogs.  As an online service, Livewire has the benefit of being accessible to young people living in regional, rural and remote areas who may struggle to find local support or peer networks.

Re-building the community
In 2018 a review of Livewire was undertaken, acknowledging that technology, the organisation, and the sector has evolved significantly since the inception of the program. When the community started, young people rarely used mobile phones to access the program, and internet accessibility was comparatively limited. Over the years mobile devices have become become increasingly important in maintaining relationships and feeling connected with friends, current affairs, and youth culture. For the site to stay relevant, the Livewire program needed to progress. Young people were telling Starlight they wanted it to be easier to use on mobile devices, faster and more interactive. The new design has taken this all into account, partnering with young people throughout the process to ensure the new site matched their vision.

As well as redeveloping the site, Starlight also reviewed the membership and who could access the community. As part of this process Starlight partnered with a number of expert mental health organisations including Reach Out and the Butterfly Foundation to review the need to expand Livewire’s membership to include young people with a primary mental health diagnosis. A key recognition in the process was that there is already a cohort of current Livewire members with known mental health conditions (often as secondary outcome of their initial illness). The findings of the review led to the formal inclusion of adolescents and young people with a mental health diagnosis..

Given the limited resources in rural and regional areas, this broadening of the community has been welcomed by both health professionals and young people. Informal feedback from members and parents has indicated that they credit Livewire with benefits in the member’s wellbeing, influenced by opportunity for social connection and inclusion, and encouragement of positive coping mechanisms.

Connection and support across the country
The Livewire online community has supported thousands of 12 to 20-year-olds, providing a safe space for connection and a platform for social interaction, self- expression, understanding, and personal development. Members share stories and talk about whatever’s going on in their life, from upcoming medical procedures to issues with friends and family. Their condition is the common denominator, but not necessarily the topic of their interactions. Livewire is place where they can simply be a young person and their geographical location presents no boundaries.

The Starlight Children’s Foundation was a sponsor of the 15th National Rural Health Conference, Hobart 24-27 March 2019.