The power of connection for teenagers with chronic illness

  • Teenage girl in light pink top posing for camera
By
Starlight Children’s Foundation
Dr Claire Treadgold,
National Manager, Research & Evaluation,
Starlight Children's Foundation;
Georgia, Livewire online community member
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Georgia is a 15-year-old who loves making new friends. She is homeschooled and lives in a regional area. Georgia uses online spaces to meet new people and talk about her interests. Georgia also has a disability that affects her speech, which has led to people making cruel comments and remarks in some of the online communities she frequented. This has understandably affected her emotional wellbeing.

Adolescence brings many challenges, with physical, psychological, cognitive, emotional and social growth all rapidly occurring. Having a chronic condition can be particularly disruptive during this critical developmental period. In Western countries, an estimated 20‑30 per cent of adolescents have a chronic illness, with approximately 10‑13 per cent estimated to have a chronic illness that substantially limits their daily life.

In general, teenagers with a chronic illness are at increased risk for poorer emotional wellbeing and health-related quality of life than their healthy peers. It is believed that these poorer outcomes may, in part, be due to lengthy hospitalisations, missed school and social milestones (such as school dances or graduation), painful medical procedures, physical differences, and isolation from family members and friends. The ongoing disruptions to social lives, in particular, may have a significant negative impact for teenagers, affecting their mental wellbeing.

When Georgia first joined Starlight’s Livewire online community, she was worried that she would encounter the same kind of treatment she had endured in other online spaces. However, as she interacted more with the Livewire online community (a dedicated site for teenagers with serious or chronic conditions that promotes social connection and support), Georgia’s confidence grew and she formed solid friendships with other Livewire members. These friendships gave Georgia the confidence to approach the site’s Chat Hosts about running her own livestreams.

With the support and encouragement of the Chat Hosts and her friends on Livewire, Georgia has now planned and co-hosted two popular livestreams on Livewire, with plans for more to come. The supportive and accepting Livewire online community has given Georgia a space where she can be herself, be creative, have fun and be confident that the comments she gets online will be kind. This support for her mental wellbeing is a protective factor that others on the site have also talked about: ‘Livewire allowed me to have creative freedom and always get a positive response, no matter what I post.’

Teenagers like Georgia have limited opportunities to connect with peers with similar life experiences. Adolescents with a chronic illness and/or disability may experience psychosocial maladjustment due to lack of an ‘in-group’ (that is, a social group which a person identifies as being a part of), no sense of normalcy and feelings of loneliness. For adolescents with a chronic illness and/or disability, social connectedness can promote resilience and overall wellbeing and may be a protective factor for those with particular mental health concerns.

Livewire specifically provides activities such as livestreams, chat rooms and ‘workshops on demand’ (guided creative activities that often include mindfulness and self-care content) to promote this connection and encourage mental wellbeing.

As another member of the Livewire community said, ‘I think more workshops on demand would be amazing for the mental health of people in the livewire community, to help cope with their illnesses or health conditions. I know it is the highlight of my day when a parcel comes for me and the suspense of what will be in there and what I can make/do with what comes in the boxes. I know it's silly but it really is the highlight of my day, if not week.’

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