RT Journal Article
SR Electronic
T1 Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocol
JF BMJ Open
JO BMJ Open
FD British Medical Journal Publishing Group
SP e090672
DO 10.1136/bmjopen-2024-090672
VO 15
IS 5
A1 O’Brien, Penny
A1 Sinclair, Craig
A1 Kinsey, India
A1 Zanker, Jesse
A1 Juhrmann, Madeleine
A1 Smith, Robyn
A1 Thompson, Sandra
A1 Bessarab, Dawn
A1 Lo Giudice, Dina
YR 2025
UL http://bmjopen.bmj.com/content/15/5/e090672.abstract
AB Introduction Although Aboriginal and Torres Strait Islander peoples are increasingly living healthier and longer lives, they continue to experience a high prevalence and incidence of dementia and cognitive impairment. Navigating dementia care services is challenging, and there is limited availability of flexible, culturally secure health and community care services. The aim of this study is to use a culturally adapted patient journey mapping methodology to examine the lived experiences of Aboriginal and Torres Strait Islander Aboriginal peoples living with dementia/cognitive impairment and their carers navigating their care journeys.Methods and analysis The overarching principle guiding this project is cultural security, referring to the incorporation of processes such that the research will not compromise the cultural rights, values and expectations of Aboriginal and Torres Strait Islander peoples. In this three-phase participatory action research study, we will (1) formalise relationships with health and home care services as recruitment sites; (2) conduct research yarns (a culturally secure qualitative data collection tool) with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers about their experiences of healthcare including perceived barriers and enablers to high-quality care. Data collected in research yarns will be analysed using a modified framework approach to map patient journeys and; (3) make recommendations for improving care identified by participants to be discussed and refined with stakeholder groups and to inform best practice guideline development.Ethics and dissemination This project follows the National Health and Medical Research Council’s guidelines for ethical conduct in research with Aboriginal and Torres Strait Islander communities and has been designed with active involvement and governance by Aboriginal and Torres Strait Islander peoples. The results will be disseminated through community feedback sessions, newsletters, conference presentations, peer-reviewed publications and best practice guidelines. Dissemination will also be guided by an established Aboriginal Reference Group.