Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocol
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 availabilit...
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BMJ Publishing Group
2025-05-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/15/5/e090672.full |
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| author | Craig Sinclair Sandra Thompson Dina Lo Giudice Madeleine Juhrmann Dawn Bessarab Robyn Smith Jesse Zanker Penny O’Brien India Kinsey |
| author_facet | Craig Sinclair Sandra Thompson Dina Lo Giudice Madeleine Juhrmann Dawn Bessarab Robyn Smith Jesse Zanker Penny O’Brien India Kinsey |
| author_sort | Craig Sinclair |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-0c829fa2d31c407394f60cef09289c4e |
| institution | DOAJ |
| issn | 2044-6055 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-0c829fa2d31c407394f60cef09289c4e2025-08-20T03:09:12ZengBMJ Publishing GroupBMJ Open2044-60552025-05-0115510.1136/bmjopen-2024-090672Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocolCraig Sinclair0Sandra Thompson1Dina Lo Giudice2Madeleine Juhrmann3Dawn Bessarab4Robyn Smith5Jesse Zanker6Penny O’Brien7India Kinsey8School of Psychology, University of New South Wales, Randwick, New South Wales, AustraliaCombined Universities Centre for Rural Health, The University of Western Australia, Perth, Western Australia, AustraliaDepartment of Medicine, Royal Melbourne Hospital, The University of Melbourne, Melbourne, Victoria, AustraliaResearch Centre for Palliative Care, Death and Dying (RePaDD), College of Nursing and Health Sciences, Flinders University, Adelaide, South Australia, AustraliaCentre for Aboriginal Medical and Dental Health, University of Western Australia, Perth, Western Australia, AustraliaDepartment of Medicine, Royal Melbourne Hospital, The University of Melbourne, Melbourne, Victoria, AustraliaDepartment of Medicine, Royal Melbourne Hospital, The University of Melbourne, Melbourne, Victoria, AustraliaDepartment of Medicine, Royal Melbourne Hospital, The University of Melbourne, Melbourne, Victoria, AustraliaUniversity of New South Wales, Sydney, New South Wales, AustraliaIntroduction 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.https://bmjopen.bmj.com/content/15/5/e090672.full |
| spellingShingle | Craig Sinclair Sandra Thompson Dina Lo Giudice Madeleine Juhrmann Dawn Bessarab Robyn Smith Jesse Zanker Penny O’Brien India Kinsey Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocol BMJ Open |
| title | Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocol |
| title_full | Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocol |
| title_fullStr | Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocol |
| title_full_unstemmed | Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocol |
| title_short | Developing patient journey maps with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers: protocol |
| title_sort | developing patient journey maps with aboriginal and torres strait islander peoples living with dementia or cognitive impairment and their carers protocol |
| url | https://bmjopen.bmj.com/content/15/5/e090672.full |
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