"It's more than pieces of paper": Understanding Aboriginal and Torres Strait Islander lived experiences of kidney health

Abstract

This thesis explores the lived experiences of a group of Aboriginal and Torres Strait Islander people with kidney health challenges. It explores their interaction with health information, clinical education and health advice. This research gives a voice to their experiences in nephrology and describes the interactions they had with their health and well-being care providers.

As qualitative researcher, this work seeks to understand their insights and perceptions of health literature; it positions the participants’ perspective as central to the research. It highlights the positioning of chronic kidney disease (CKD) as a health priority for the participants and gathers data about their experiences as they sought care from their health professionals. Hearing the different challenges and barriers that the Aboriginal and Torres Strait Islander participants faced, and their attempts to best manage their CKD, assists in developing an understanding of the adversity that they must face and overcome.

This research highlights the importance of understanding one’s own health and demonstrates the importance of using relevant and patient centred health information and education. I have used Indigenous methodology and a decolonisation approach that is ethically appropriate, ensuring the establishment of meaningful relationships throughout my research and facilitating the participant experience through engaging about the health, information, education and advice they received.

The overarching purpose of my research was to gain an insight into the lived experiences of CKD and patient health information. In hearing the participant’s voices and gaining an understanding of their lived experiences within nephrology, it became evident that there is much to be done to improve much of the CKD patient’s experiences. The participant’s data points to solid recommendations for change in how CKD health information and services are offered within an Aboriginal and Torres Strait Islander context.