Background:
Blood cancer is predominantly experienced by an older population (65+). It's also one of the most common childhood cancers. The diagnosis of blood cancer in young – middle adulthood is less common & there is limited, relevant support available.
A diagnosis at this life stage presents unique challenges, particularly long-term survivorship needs. We've identified this cohort as a small, high needs group who feel isolated in their experience. Many existing cancer services for young people have an upper age limit of 25. This means they risk falling off a 'support cliff' as they enter new life phases with unique age & stage related challenges.
Aim:
1. Engage consumers in a program co-design
2. Pilot age-appropriate online peer group (20 - 49 years)
3. Promote connections between participants beyond the group via social media
4. Evaluate & meet ongoing need
Methods:
1. The content & format were developed based on the lived experience of the co-design group.
2. Topics included self-identity, communication & relationships, transitions & tricky conversations.
3. Closed, evening group delivered over 5 fortnights to enable safety & rapport.
4. Groups co-facilitated by a Leukaemia Foundation health professional & co-design peer consumer.
5. Online chat platform used to encourage discussion & support between sessions.
Conclusion:
Feedback confirmed the need for this group, with age relevant peer connection as the most valued aspect, followed by content relevant to their life stage. Unique discussion themes included loss of autonomy, managing late effects, multiple caring responsibilities, missing life milestones. Future directions include increasing delivery to meet demand, growing an age-specific peer community via an online platform, recruit new peer facilitators & promote the group as a support option for those transitioning from AYA services.