Skip to main content

Rheumatic Heart Disease Australia

RHD Resouces

What does screening mean to the screened?

A qualitative follow-up study to South Australian Childhood Rheumatic Heart Disease Screening Project (SACRHD) will explore the perspectives of the children and families who were screened during the project.

The Wardliparingga Aboriginal Research Unit at the South Australian Health and Medical Research Institute (SAHMRI) has been conducting SACRHD. Over the past year, more than 1,800 children (predominantly Aboriginal and Torres Strait Islanders) have been screened using echocardiography. Twenty cases of RHD or borderline RHD have been found through this process, with sixteen of the twenty being new diagnoses.

SAHMRI plans to build on these results and has been funded to extend the screening, but wanted to assess the process from the participants' points of view before proceeding. Telethon Kids Institute and the END RHD CRE are funding Wardliparingga to carry out a qualitative follow-up of these twenty families, so that future screening programs may be designed to minimise negative impacts.

The objectives are:

  • to provide a better understanding of the children's and families' experiences - both during the screening and subsequently with the health system.
  • to gather direct participant input on what should be done differently or better.
  • to explore the longer term health and social impacts on the children and their families.
  • to investigate the implications associated with RHD screening programs for Aboriginal and Torres Strait Islander people.

The lead investigator on this project, Professor Alex Brown, is a renowned Aboriginal medical doctor and researcher. The discussions with the children and their families will be facilitated by two Aboriginal clinical research trainees. The trainees will receive training and experience in conducting qualitative discussions, designing and conducting research in general, as well as analysing and reporting on the results. The project manager is Frances Eltridge, who has thirty years' experience in conducting qualitative and quantitative studies.

The project is in the process of obtaining ethics approval and will get underway with the commencement of the 2017 school year.

We look forward to providing updates on this study as it progresses.