Parents of children diagnosed with a chronic health condition: Help us understand what supports you need!

Researchers at Macquarie University are inviting parents of children with a chronic health condition to share their experiences of seeking – or not seeking – professional help for themselves in an anonymous online survey. Your insights could help shape better services, professional training, and resources for families.

Who can take part in this study?

We are looking for parents of children aged 4-18 years who have been diagnosed by a medical professional as having a chronic health condition such as asthma, cystic fibrosis, type 1 diabetes, epilepsy, juvenile idiopathic arthritis, or inflammatory bowel disease (Crohn’s disease/ulcerative colitis), and who first developed symptoms at least a year ago.

We are seeking volunteers (aged 18 years or older) who also meet the following criteria:

✅   A primary or joint caregiver
✅   Live in Australia
✅   Able to read and write English comfortably
✅  Does not care for any child diagnosed with, or strongly suspected of having, autism (ASD), PANS and/or PANDAS.

What does research participation involve?

💻   Complete an anonymous online survey of about 20 minutes

💻   At the end, you can enter a random prize draw to win 1 of 5 $50 e-gift vouchers

Interested?

  1. Visit tinyurl.com/ChildrenWithCHC
  2. You’ll be taken to a Participant Information and Consent Form, which provides the full details of the study
  3. If you consent, you’ll be directed to a short screening survey
  4. If you meet the criteria for study participation, you’ll then be directed to the full survey

Ethics information

This study has been approved by the Macquarie University Human Research Ethics Committee (Ref: 520251806763690).

The study is being undertaken by Samantha Cuming, Registered Psychologist and PhD Candidate in the School of Psychological Sciences, Macquarie University, under the supervision of Professors Maria Kangas and Naomi Sweller.

Crohn’s & Colitis Australia (CCA)
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