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Action Plan Community Survey

Consumer Surveys Summary of Findings  

Thank you to everyone that participated in both the general community survey and the young people survey, the findings have helped us gain insight and a better understanding of the information gaps in our community, the preffered learning styles and mediums and the types of resources we need to produce to fill these gaps and better support you.




  • General Consumer: There were 570 respondents to this survey. The majority were female, English-speaking, non-Indigenous, most often a parent of a young child with congenital heart disease, who is already engaged with HeartKids information and networks 

  • Young People: There were 137 respondents to this survey. Most were English-speaking, non-Indigenous 12 to 25 year olds born with a congenital health condition 


Learning styles:  

    1. Reading is the most popular learning style and written resources, such as fact sheets, are important to our general consumers
    2.  Video information that supports the watching learning style is popular with our teenage audience
    3.  Talking ranks highly with all our audience as a way to access health information, reinforcing the value of the HeartKids helpline
    4.  Visual elements such as photographs, diagrams and drawings are popular.


    1. Most general consumer survey respondents (70%) first heard about HeartKids when in the hospital setting, whether through the nursing staff, a social worker, another family, etc. 
    2. Within this figure, 16% of respondents heard about HeartKids through a brochure or poster at the hospital, reaffirming the importance of circulating physical collateral in hospitals.
    3. A smaller proportion (13%) heard about HeartKids through online methods, such as Google or social media.
    4.  Some (11%) heard about HeartKids through their cardiologist, reinforcing the importance of us engaging directly with cardiologist networks in each state and territory and ensuring we keep a high profile with these groups.  
    5. Only 1% of respondents heard about us through their GP, reinforcing that The Action Plan’s focus on primary care in 2021 and 2022.  


Information gaps: 

General Consumer 

  • Common themes of identified information gaps include: 

    • Surgery and what to expect in the hospital
    • Condition-specific details presented in plain English
    • Practical support including travel assistance, accommodation, hospital preparation and financial support options
    • Mental health support with better access and clearer pathways to care, including family coping
    • Stories from others in a similar situation, peer support and events
    • Teens and transitioning from child to adult care
    • Managing the condition in adulthood
    • Starting school and managing developmental delays
    • Australian-specific information and access to research  
    • Long-term outlook, including life expectancy and quality of life  


Young People 

  • Teens indicate consistently that they are feeling unsure and under-prepared for transferring to adult care 

  • Their main concerns recorded were 

    • Not knowing their new team
    • Not understanding the process and not having information on the adult services they would be accessing
    • Feeling lost in the system and loss of the personal connection to their old care team
    • Poor mental health support  
    • The responsibility of adulthood and their condition  

  • All age groups indicated that they do not or did not consistently raise these concerns with their paediatric team prior to transferring to adult care  

  • Content sought by a large majority of this group was information about their condition including symptoms, treatment, prognosis and life expectancy  

  • Connecting with peers was also ranked highly as an area they sought out via online platforms  


Device type:  Mobile is the most used device type but there was no preference for an app vs a mobile-optimised website, therefore resources should be designed for mobile-first  


Quotes that support some of the findings:


‘Clearer lists of what HeartKids can do to help with links of how to access that help’ 

‘Just everything would be great if it was in one place as a guide of where to go next’ 

 ‘I don’t know what I don’t know – what things should I be looking out for in my life?’ 


Young People 

“I am worried that I will give the wrong info or forget something important”  

“I feel lost as I don't feel I have any familiar health care providers to receive help from”  

“I felt lost in the system and the waiting time mentally took its toll”