One thing I’ve come to understand is we cannot underestimate the additional stress the pandemic has caused for seriously ill children, young people and their families, as well as the health professionals who work tirelessly to care for them. Living through the pandemic has also meant living daily with feelings of uncertainty, with the disruption of social isolation and infection control some things we can all now relate to.
Adolescents have been particularly impacted by the social isolation. Adolescence is a time of rapid physical, psychological, emotional and social development. When you overlay a diagnosis of serious illness, things become even more challenging. Starlight recognises there are unique and unmet psychosocial needs of adolescents (and their siblings) in this situation.
All young people with serious illness have an increased risk of negative psychosocial outcomes, such as lower overall life satisfaction and poorer mental health. For adolescents in rural or regional areas, the isolation can be compounded by a lack of peers with similar experiences, as well as the limited availability of, or access to, support services.
So, for Starlight, ensuring that we are there for seriously ill young people – supporting their mental health and wellbeing – is more important than ever. Especially when you consider teenagers represent over a third of all hospital admissions in Australia. We do this via our program called Livewire.
Livewire plays a vital role in helping thousands of young people, aged 12 to 20 years, to cope with the stress and isolation of serious illness. Livewire helps young people in hospital build valuable social connections through a fun, safe and supportive community. They participate in things they may have missed out on and interact through things like tailored sessions, creative workshops, mini-festivals and competitions. They meet new friends who are going through a similar experience.
Livewire offers an adolescent-only space where they can have respite from the isolation felt in hospital. And, when teenagers return home, they can continue online the friendships they built in person.
Livewire has the benefit of being accessible to young people living in regional, rural and remote areas where it may be challenging to find local support or peer networks. Forty per cent of active members join from these areas. Livewire is a place where location presents no boundaries – it is where every young person needs it to be, when they need it.
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 their common ground, but not necessarily the topic of their connections. Livewire is place where they can feel safe and simply be a young person.
The Livewire online community is actively moderated and secure. It is accessible to those at home or in hospital, utilising a form of communication and platforms commonly used by young people. It promotes the voice of lived experience through live chat, private messaging, community and entertainment content, projects and blogs.
Livewire is constantly evolving – acknowledging that technology, the organisation and the sector have changed significantly since the inception of the program.
For Starlight, the silver lining of the pandemic was that it gave us the gift of time to conduct important research. It was a catalyst for improvement and innovation at Starlight.
A recent evaluation of the program found that Livewire fills an important gap for young people and their families, with no similar service generally available in hospitals. Members and parents said they benefit greatly from the opportunity for social connection and inclusion, and the focus on positive coping mechanisms.
The evaluation also found Livewire is highly valued by health professionals. It fosters social connections and offers the opportunity for young people with an illness to do things they usually miss out on. It lifts their mood and builds self-esteem and self-efficacy, as well as an all-important belief in themself.
Not surprisingly, we are experiencing unprecedented levels of community demand and engagement. In 2020 we saw a 15 per cent increase in logins as well as a 21 per cent growth in new youth members. Every month there are around 3,800 experiences created in hospital and 2,500 young people log into Livewire online.
We are so thankful for the hundreds of wonderful Livewire facilitators, who devote their energy to shining so brightly and bring this program to young people all around the country. We also acknowledge the fantastic work of the health professionals we partner with. And what drives us every day is the wonderful feedback from our members, like 13-year-old Jess who said ‘What I loved most about Livewire was the fact that everyone was a teenager with a serious illness or a disability. We were simply all the same. And for the first time in years I was ‘normal’.’