HeartKids are dedicated to championing important research to deepen understanding and enhance outcomes for those living with CoHD. We collaborate with esteemed researchers to promote and share impactful studies that seek community involvement. Explore the research projects below and discover potential opportunities for you or your family to participate.
Current research participation opportunities for individuals with CoHD and their families
Note: While HeartKids actively promotes various research projects, we do not conduct these studies ourselves. Your decision to participate, or not, in any research is independent and will not affect your relationship with HeartKids in any way.
Siblings – Can you help us design a new research study?
This study will provide the first vital insights into what the hospital visiting experience is like for families: the siblings, their parents or guardians, their extended family members, and the healthcare staff who work with them in the PICU. Findings will help researchers begin to identify how siblings and families can be better supported. In addition, the findings will help to inform the co-development of an evidence-based resource to support sibling inclusion and family togetherness in the PICU, which will eventually have significant implications for supporting HeartKids families during an PICU admission.
Details:
- Lead Researcher: Dr. Ashleigh E Butler, La Trobe University
- Location: Victoria. Meeting in person or via Zoom.
- Participation Request: Children and young people (aged 5 -18 years) who have visited a brother or sister in PICU in the last 5 years. Primarily researchers would like to connect with siblings in Victoria to work with them in person but could also work via zoom or email with interested siblings from around Australia.
To register your interest in participating, email Ashleigh at A.Butler@Latrobe.edu.au
Transition Compass: A co-design study
The transition from paediatric to adult care can be difficult to navigate, especially given the siloed and fragmented healthcare system in Australia. This study is conducting a series of codesign workshops held with adolescents and young adults (AYAs), parents, paediatric healthcare professionals and adult healthcare professionals to better understand what can be done better in this space. The purpose of this project is to understand the preferences, perspectives, and lived experience, of those who have experienced health care transition, with the aim of informing a future transition intervention.
Details:
- Lead Researcher: Dr. Jordana McLoone, UNSW Sydney
- Location: NSW, VIC, SA
- Participation Request: Teenagers, young adults and families in NSW, VIC, and SA who are currently managing transitions to adult healthcare.
To register your interest in participating, email Jordana at j.mcloone@unsw.edu.au
10,000 Steps website and app focus group
This initiative is aimed at enhancing the 10,000 Steps website and app for children and families. Families and individuals are invited to participate in a series of focus groups to share your feedback on how the 10,000 Steps website and app can be improved. This collaboration will identify necessary adjustments to make digital platforms more engaging and supportive for families striving to be more active.
The researchers are particularly looking for families who feel they aren’t quite meeting their physical activity goals—whether it's the parents, children, or both. Your insights are crucial in developing ways to make the 10,000 Steps program more accessible and enjoyable for families like yours.
Details:
- Lead Researcher: Dr. Stephanie Schoeppe, Central Queensland University
- Location: QLD
- Participation Request: Queensland families and individuals impacted by CoHD to participate in a focus group study.
Click here to register your interest to participate.