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Health-related quality of life (HR-QoL) is a valued patient-related outcome measure. HR-QoL is typically measured using a psychometric tool. Although there are a number of general and illness-specific HR-QoL measurement tools available globally, no tool has been validated for Australian Aboriginal and/or Torres Strait Islander children. The purpose of this study was to gather Australian Aboriginal and Torres Strait Islander parent/carer perspectives of HR-QoL in children in order to inform the development of a culturally appropriate tool. Yarning circles and face to face interviews were used to document the experiences of parents and carers of Aboriginal and Torres Strait Islander children who had experienced a chronic illness. Participants were recruited through word of mouth and via established social and professional networks in Queensland and the Northern Territory of Australia. Information collected was transcribed and analysed thematically and placed into a concept map. HR-QoL was defined as more than just physical, social and psychological wellbeing. Family and social support were valued aspects of HR-QoL, as was knowledge, communication and the relationship with the health system. Participants described the importance of being heard; their voice trusted and valued by health practitioners. Racism and prejudicial behaviour had negative impacts on HR-QoL. The concepts of HR-QoL identified in this study are not included in conventional HR-QoL measurement tools. Consideration should be given to concepts proposed by Australian Aboriginal and Torres Strait Islander populations in order to adequately capture perceived HR-QoL.

Concepts of Health-Related Quality of Life of Australian Aboriginal and Torres Strait Islander Children: Parent Perceptions