Co-designing a Health Journey Mapping resource for culturally safe health care with and for First Nations people

Changes in the way health care is provided for and with First Nations peoples

Increasingly, healthcare services, professionals and accreditation processes are recognising that Australia’s biomedically focused healthcare system does not adequately consider, nor meet the health and wellbeing needs of, First Nations people (Aboriginal and/or Torres Strait Islander peoples) (Yashadhana et al. 2021). Historically, Australian health services and structures have been built upon the priorities and worldviews of the ‘Eurocentric majority’, excluding specific health and wellbeing needs of First Nations people (Gatwiri et al. 2021). Targeted work is therefore needed to address the deeply entrenched discrimination and racism within our healthcare systems (Nolan-Isles et al. 2021).

There is increasing recognition that the provision of culturally safe and responsive care requires systems level changes, as well as professional and interpersonal level changes, informed by First Nations people (Wilson et al. 2020). Healthcare services and workers uphold standards to protect the public from harm and improve quality of care. In Australia, these include specific national standards relating to culturally safe care for First Nations people, as defined by health systems (ACSQHC 2017) and healthcare disciplines (AHPRA 2020).

Culturally safe care requires shared respect and knowledge, deep listening, removal of barriers, acknowledgement of cultural differences, reflecting on one’s own assumptions and prejudices and appreciation that the same care is not always appropriate for, or responsive to, the needs of different individuals (Mackean et al. 2020). A therapeutic culturally safe relationship identifies and responds to the individual healthcare needs of each patient or client, resulting in co-designed care that is perceived as safe by the recipient of care (Gollan and Stacey 2021).

Healthcare professionals and health services can respond to ongoing gaps and needs in everyday practice by engaging in two-way communication, building and maintaining respectful relationships, critically reflecting on their practice and unconscious biases, acknowledging the impact of history and colonisation and supporting First Nations healthcare professionals (Mackean et al. 2020; Fisher et al. 2021). Creating culturally safe environments and practicing in a culturally safe manner is an ongoing learning and reflective process as individuals strengthen their knowledge and understanding by listening to recipients of care and reflecting on their own practice (ACSQHC 2017; Gollan and Stacey 2021). While this is often difficult to achieve in busy clinical settings, journey mapping can assist in providing structural frameworks for enacting, embedding and evaluating cultural safety.

Journey mapping

Journey mapping is a method of describing and recording different stages of patients/clients’ healthcare interactions, enabling assessment of strengths and gaps in care (Fraser et al. 2021). Mapping illustrates patient experiences and allows gaps to be identified from the perspectives of patients, families and healthcare providers (Joseph et al. 2020). The resulting information or ‘journey maps’ may be compared with, and evaluated against, existing guidelines, standards and models of care for continuous quality improvement (Fraser et al. 2021). The development and use of journey mapping in health care has increased over the past decade (Davies et al. 2022). However, as this is an emerging field of practice, there is currently no consistency in methodology or reporting on use and effectiveness of journey mapping, highlighting the need for clearer methodologies and reporting guidelines (Joseph et al. 2020; Davies et al. 2022).

Co-designing mapping tools

Between 2008 and 2015, the Managing Two Worlds Together (MTWT) research project was undertaken to identify and address the challenges that many Aboriginal people living in rural and remote areas of South Australia and Northern Territory face throughout their health care journeys to and from Adelaide city hospitals (The Lowitja Institute 2015; Kelly et al. 2017). The research team interviewed First Nations patients and family members undergoing health journeys, and the healthcare professionals in rural, remote and metropolitan health services. At the time the team identified there were no existing tools to identify different dimensions of health that included factors impacting access and quality of care, and multiple perspectives from patients, families and health professionals. The team therefore co-designed patient journey mapping tools with First Nations patients, families and health professionals, and non-First Nations health professionals who were research participants, resulting in the development of the MTWT mapping tool, a workbook and series of case study reports published by the Lowitja Institute (The Lowitja Institute 2015; Kelly et al. 2017). These resources identified ways of mapping barriers and enablers of care and developing responsive strategies.

In 2020 members of the MTWT research team sought to evaluate the effectiveness of the MTWT patient journey mapping tools in practice, and determine if there was a need to update or co-design new tools. They approached the Lowitja Institute who funded a review of citations and evaluation of effectiveness by people who had used the tools, and then a project to co-design and pilot a new set of Health Journey Mapping (HJM) tools. This research project was conducted in collaboration with members of the Aboriginal Kidney Care Improving Outcomes Now (AKction) Research project, a First Nations led project at the University of Adelaide, Adelaide Nursing School. This paper reports on the citation review, evaluation and co-design of three new HJM tools and education resources. The overall aim of this project was to review accessibility and usability of the MTWT patient journey mapping tool and resources, and develop new HJM tools and resources.

Phase 1a. Literature search

Phase 1b. Survey

Phase 2. End user industry review and co-design

Phase 3. Field testing and piloting to review resource

Ethics approval

Ethics approval for the Health Journey Mapping project was provided by the Aboriginal Health Council of South Australia, AHREC Protocol #04-20-896. This project was conducted in collaboration with the AKction project that received ethical approval from the Aboriginal Health Council of South Australia, AHREC Protocol # 04-22-944, the Central Adelaide Local Health Network Human Research Ethics Committee (HREC reference number: HREC/19/CAHLN/45, CAHLN reference number: R20190124) and the University of Adelaide Research Ethics Committee (UoA ID 33394). This project was conducted according to the NHMRC National Statement on Ethical Conduct in Human Research.

Phase 1a. Literature search

There were 20 pieces of work published by the MTWT project; including six peer reviewed journal articles, two project reports, two workbooks and 10 case study reports. Of these, 14 were cited in 73 published works. These publications included 58 peer reviewed articles, nine PhD theses, two reports, two conference papers and two textbook chapters. Sixty-two of these publications were from Australia, three from Canada, two from the United States of America and one each from the United Kingdom, the Netherlands, Germany, Pakistan, the Maldives and Italy (see Supplementary data).

Six sources reported actual use of the MTWT tool to map patient journeys in other studies (Table 1). These were predominantly in Australia, with growing use of the concepts and implementation apparent in Canada. The tools were used to map diverse patient journeys for a range of purposes including: assisting direction and provision of services for Aboriginal patients experiencing chronic health conditions (Armstrong et al. 2021); understanding gaps in health care for rheumatic heart disease in pregnancy for Aboriginal women (Belton et al. 2018); understanding patients perspectives of barriers and enablers for burns care in Aboriginal children (Fraser 2019); patient experiences of pregnancy loss (Freeman 2020); cultural safety in Aboriginal patient journeys (Kelly 2017); and understanding access to care in hospitals following burn injuries for Aboriginal children (Ivers et al. 2015). Findings from this literature search informed design and content of the MTWT survey and identified potential survey participants.

Phase 1b. MTWT survey

Findings from the survey identified that the MTWT tool was used by a range of people and purposes in diverse settings. The majority of participants who reported using the tool were non-First Nations (14 non-First Nations, 4 Aboriginal and/or Torres Strait Islander, 1 no response). They had backgrounds in research (12), education (5) and health care (2). The majority of patients whose journeys were mapped were First Nations (Aboriginal and/or Torres Strait Islander: 11, Inuit: 1, non-First Nations: 3).

The MTWT tool enabled users to support patients’ journeys in multiple ways including identification of gaps in their journeys, providing evidence for care, looking at multiple perspectives, being person centred and making sense of complex barriers to help seeking. The majority of participants mapped multiple patient journeys with the MTWT tool. Data for mapping was predominantly gathered via interviewing patients, healthcare professionals and/or family members (30), followed by using case notes (5) and one participant who mapped their own journey (1). The majority of mapping was conducted retrospectively (retrospective mapping, real time mapping, mapping before a journey). Many participants were actively involved patients in the mapping processes (actively involved patients: 8, did not actively involve patients: 9).

Many participants reported difficulty initially engaging with the tool and made suggestions to improve existing limitations. Participants particularly found the tool initially difficult to ‘pick up and use’, reporting that it took them time to understand how to use the tool and engage in mapping activities. Participants suggested making the tools simpler to use, including simpler language and worked examples, prompts and visual resources. Participants also preferred the name ‘Health Journey Mapping’ compared to ‘Patient Journey Mapping’ as it ‘would be more reflective of recognising that health journeys are not just for patients’ but also for families, community and healthcare professionals. Removal of the term ‘patient’ additionally identifies that individuals whose journeys are mapped have lives and responsibilities beyond their role as a patient (Fig. 2).

Fig. 2.

Summary of MTWT survey results (Phase 1b). †Quotes from 19 survey participants.

Phase 2. End user industry review and co-design

Input from end users informed the development of the new HJM resources by highlighting areas to focus on, format suggestions and recommended supplementary resources. End users specifically identified: the need to have three tools with different purposes: a clinical tool for busy clinicians to quickly pick up and use, a detailed care planning tool and a strategic tool to bring together multiple perspectives; for mapping to follow a four step process including a review stage; to link the tools and educational material to continuous quality and improvement, cultural safety, comprehensive care and the National Safety and Quality Health Service (NSQHS) standards (ACSQHC 2022); and for the mapping tools to be accessible in both Word and Excel versions (Table 2).

Phase 3. Field testing and piloting to inform final version

Findings from phases 1 and 2 resulted in the development of three distinct HJM tools (clinical, detailed and strategic) and educational materials (videos, worked examples, case studies and PowerPoints with voiceovers) (Fig. 3, Table 3). The clinical HJM tool was designed for busy healthcare clinicians to use in everyday practice. The detailed HJM tool enabled comprehensive care planning and evaluation. The strategic HJM tool brought together multiple perspectives of patients, family and health services across different stages of a journey. These tools were made available in interactive Excel, PDF and Word formats, following a four-step reflective mapping process (plan, do study, act and review for the clinical HJM tool; look and listen, think and discuss, take action together and review effectiveness for the detailed and strategic HJM tools). The research team facilitated multiple workshops with end users to identify how the resource could be best utilised in healthcare sites and adaptations needed to meet their specific requirements.

Fig. 3.

Summary of the three HJM mapping tools, their purposes and processes for mapping journeys (Phase 3 results). HJM, Health Journey Mapping.

These HJM tools and resources are increasingly being used by a range of healthcare workers and researchers across South Australia for First Nations and other recipients of care, this increase in use occurring both during and following the field testing and piloting phase. Uses include to map adolescent clinic transitions from the Women and Children’s Hospital to the Royal Adelaide Hospital, to identify gaps in care for near miss and poor outcomes for Aboriginal patients at the Royal Adelaide Wellbeing Hub, to map cardiac and eye care journeys at Flinders Medical Centre, to map health care experiences of women with disabilities who have experienced violence, to evaluate the role and effectiveness of kidney health peer navigators, to map the oral health journeys of people with chronic kidney disease and to voice renal health care recommendations by mapping the journey of an Aboriginal woman with chronic kidney disease (Cormick et al. 2022). Internationally the resources are being used by clinicians and researchers working with First Nations peoples in Canada.

Many end users identified that using the HJM mapping tools has helped them identify and legitimise the time required to build rapport and communicate more effectively with patients, even in a busy clinical settings. Those end users who had not applied the mapping tools instead utilised the concepts embedded within mapping tools and applied them to existing resources and clinical practices.

Limitations

The tight timeline for completion linked to funding requirements was a limiting factor for this project. In addition, workforce demands associated with the COVID-19 pandemic reduced participation from those in healthcare settings. These demands limited end users ability to apply the tools in clinical settings, and moved many research activities from in-person to virtual formats. While this enabled flexibility for busy end users, it reduced opportunities for in-person collaboration. HJM implementation strategies are continuing beyond the project timelines, as discussed at the end of the Results section. There were more non-First Nations than First Nations participants, but three First Nations people were directly involved in the design and direction of the tools as part of the research team, and the HJM project worked in collaboration with the AKction project which is First Nations led and has a strong and diverse First Nations Reference Group. Members of this group also commented on and reviewed the HJM tools.

Future directions

Since completion of the project the tools have been implemented in various healthcare services and settings. Further research is evaluating the implementation, effectiveness and impact of the tools in improving access, experiences and outcomes of journeys. There is an emerging interest in how First Nations community members could use the tools themselves, combining cultural story-telling, art and journey mapping principles. For example, Peer Navigators in Port Augusta Kidney Care have used sand trays to map and share kidney dialysis and transplantation patient’s journeys, and the National Indigenous Kidney Transplantation Taskforce (NIKTT) are adapting the tools for community peer navigation use. The research team also plans to further engage with the university sector to design an education package specific for undergraduate and postgraduate education and research students. There is also growing interest in how the tools can be adapted and used more widely for other patient and client groups.