Aboriginal and Torres Strait Islander health research and the conduct of longitudinal studies: issues for debate

Abstract

The National Health and Medical Research Council, Research Agenda Working Group (RAWG), and the literature on Indigenous health have identified the need to fill gaps in descriptive data on Aboriginal and Torres Strait Islander health and noted both the lack of research with urban populations and the need for longitudinal studies. This paper presents some of the broad ethical and methodological challenges associated with longitudinal research in Indigenous health and focuses particularly on national studies and studies in urban areas. Our goal is to advance debate in the public health arena about the application of ethical guidelines and the conduct of longitudinal studies in Aboriginal and Torres Strait Islander communities. We encourage others to offer their experiences in this field.

Practical challenges of conducting research into rheumatic fever in remote Aboriginal communities

“…Providing information is a long way from ensuring understanding, 5 and understanding was not accepted as accomplished after just one or two visits. Although Aboriginal and non‐Aboriginal people may have different concepts of illness and causality, 6 particularly with respect to the role of invisible outside forces, research objectives were framed in a way that attempted to embrace apparently contrasting world views. It was generally agreed that the causative forces — Group A β‐haemolytic streptococci — were unseen and sinister, and they were depicted as particularly ugly creatures by the Aboriginal artist on the flip‐charts.…”

Indigenous Research: A Commitment to Walking the Talk. The Gudaga Study—an Australian Case Study

“…She questions methodologies that assume the individual is the appropriate unit of analysis (Smith 1999). Grove et al (2003) build on this view and suggest public health questions, framed in a Western paradigm, that appear to require individual-based investigation may need to be reconsidered when working in an Indigenous context. The Gudaga Study has a strong focus on not only the child, but the child's mother and the extended family that supports the mother/child dyad.…”

Public Policy, Participation and the Third Position: The Implication of Engaging Communities on their Own Terms

“…There is considerable literature, particularly in the public health area, that suggests that research with Aboriginal people needs to be much more culturally sensitive (e.g., Grove et al 2003;Humphrey 2001;Todd et al 2000). The issues here are not simply to improve the research process by increasing its cultural sensitivity.…”