Understanding Indigenous health-related quality of life in young people and their parents

This study will gather focus group data from adolescents and their parents to inform the future development of a validated HR-QoL tool advised by Indigenous participants.

Health-related Quality of Life (HR-QoL) is a patient-reported outcome considered to be very important for evaluating clinical interventions, yet no validated HR-QoL tools currently exist for Indigenous Australians. HR-QoLs conceptualized, developed, and utilized in non-Indigenous societies have limitations when used with Indigenous populations where belief and value systems differ.

Study aims:

1. Develop a validated generic HR-QoL suitable for use in children.

2. Develop a validated chronic respiratory specific QoL suitable for use in children.

To develop items that should be included in HR-QOL tools, there is a need to understand key features that are important for the target group. There will be focus groups (yarning sessions) with groups of Aboriginal and Torres Strait Islander young people (aged 13-18 years) and, separately, with their parents. There will also be yarns with young people individually if this is what they prefer.

The yarning data will be transcribed for analysis. The transcripts will be read independently by two Indigenous researchers familiar with quality of life research and qualitative analysis. They will each adopt a thematic approach to identify the key areas as they relate to Indigenous HR-QoL. They will then discuss and compare their themes to arrive at a consensus set to be explored further in future research.

Participants will be recruited through Aboriginal Community Controlled Health Services (ACCHS) and Indigenous Community Centres in Queensland in Caboolture, Toowoomba, and Dalby.

Lead investigator
Associate Professor Peter Newcombe
Chief investigator
Professor Anne Chang
Project type