HeartKids’ mission is to provide life-long support, resources and advocacy to individuals and families impacted by childhood-onset heart disease (CoHD). Listening to the voices of our community is essential to ensuring our services meet the unique needs of those we support. Recently, we conducted the HeartKids Community Survey 2024, which provided invaluable insights into your experiences, concerns, and ideas for the future.
We’re excited to share what you told us, how we’re responding, and what’s next for HeartKids.
What You Told Us
Your feedback painted a clear picture of the ways HeartKids has supported you and the areas where we can do better. The survey was completed by 207 individuals, predominantly parents and carers, with responses evenly spread across states and territories. This diverse input reflects the breadth of experiences within the HeartKids community and highlighted recurring themes about what matters most to you.
Breaking Down What You Told Us
1. Hospital Support and Immediate Assistance
You told us that hospital visits, care bags, and meal vouchers were lifelines during challenging times. Morning teas and ward visits provided not only practical help but also emotional comfort during long hospital stays.
“HeartKids has given us a friendly face at the hospital in an environment when a lot of uncertainty and worry are your daily companions.”
2. Community and Peer Connections
Camps, family events, and online groups were highly valued for building connections. Many families described how these opportunities reduced feelings of isolation and created lasting friendships.
“Since camp, my teen has continued to connect with other HeartKids and engage in teen groups on social media. It has been a huge benefit for her.”
3. Mental Health and Emotional Support
Mental health challenges remain a pressing concern for many. Families expressed a need for greater access to counselling, peer groups, and resources to support children, teens, and parents.
“As I’ve grown up, I feel the support isn’t there when I need it for my mental health.”
4. Regional and Long-Term Support
Individuals and families in regional areas can feel underserved, with limited access to events, resources, and support. Some families also expressed a need for stronger connections and follow-ups after hospital discharges, leaving them uncertain about the next steps in their journey.
“It would be amazing if HeartKids would support young adults and in regional areas. I struggle as an adult living with CHD in a location that I have to travel for all of my healthcare. I struggle to find people to relate to.”
5. Access to Information
While many families found HeartKids’ resources useful, others highlighted gaps in condition-specific information, transition resources, and guidance for managing the financial and emotional challenges of living with CoHD.
“Information about specific heart conditions, what to expect post-surgery, and resources for siblings would be so helpful.”
What We’ve Done
Your feedback has shaped several improvements and new initiatives designed to address your needs and enhance the support HeartKids provides:
- Expanding Mental Health Services: We’ve increased access to online support with dedicated a mental health and wellbeing counsellor and small group discussions for families. Partnerships with J&R Psychology provide clinical support for those with complex needs, ensuring comprehensive care for all.
- Strengthening Regional and Community Support: Through the HeartKids For Life Model of Support, we are expanding peer mentor programs, increasing regional outreach, and fostering connections for culturally and linguistically diverse communities. New staff in areas like the Northern Territory ensure families in remote regions have access to vital resources.
- HeartKids Connect: Our online community platform is live and growing, providing a space for families to access resources, participate in tailored programs, and connect with others navigating similar journeys.
- Programs for Children and Teens: We’re introducing dedicated primary school and teen support programs, offering in-person and online holiday activities to foster connection, confidence, and belonging. These programs also provide crucial support during transitions, such as moving from paediatric to adult cardiac care.
- Expanding Peer Support: Our Peer Support Program now includes more local events, online meetups, and trained peer mentors to provide understanding, guidance, and connection for families at every stage of the CoHD journey.
- Early Childhood Intervention: We’ve piloted an Early Childhood Intervention Program, led by our occupational therapist, offering online parent support and referrals to help children meet neurodevelopmental milestones. A national rollout is planned for 2025 to address critical gaps for families not eligible for NDIS.
- Growing Community-Informed Resources: We’ve expanded our suite of resources, including the From the Heart podcast, educational videos, and factsheets, all developed with insights from the HeartKids community to ensure they meet your needs and provide clear, actionable information.
What We’re Going to Do
Looking ahead, we are committed to further enhancing our services to better meet your needs:
- Long-Term Support for Adolescents and Adults
We will be introducing more targeted programs for teens and young adults, focusing on their transition to adult cardiac care and their mental health needs. This includes both in-person events and virtual support to address isolation.
- More Accessible Mental Health Resources
Expanding our mental health services remains a priority. This includes increasing awareness of available counselling and peer support for families, siblings, and adults impacted by CoHD.
- Increased Regional Engagement
We’re working to close the gap in services for regional and remote families by increasing staff outreach, organising local events, and enhancing virtual resources.
- Comprehensive Information Resources
Developing and updating our educational materials to provide condition-specific information, guidance on financial assistance, and sibling support. These resources will ensure families feel equipped to navigate the CoHD journey at every stage.
- Consistent Follow-Ups
We’re working to improve our follow-up processes to offer support and ongoing connections, over a continuum at critical milestones for families and individuals on their CoHD journeys.
Keep sharing your thoughts!
Your voice matters to us, and we want to ensure you continue to feel supported. Whether you’re seeking information, exploring mental health support options, or want to connect with other families, HeartKids is here for you.
- Visit Our Website: Explore our updated resources and find the support you need.
- Join HeartKids Connect Online Community: Connect with others who share similar experiences through our private Facebook groups and online events.
- Reach Out Directly: If you need support, contact us via our Helpline services:
- Webchat – via our website
- Phone – 1800 432 785, Monday to Friday, 9am to 5pm AEDT
- Email – office@heartkids.org.au
Together, we can continue building a stronger, more connected HeartKids community. Thank you for trusting us to be part of your journey.