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

Background Many healthcare professionals and services strive to improve cultural safety of care for Australia's First Nations people. However, they work within established systems and structures that do not reliably meet diverse health care needs nor reflect culturally safe paradigms. Journey mapping approaches can improve understanding of patient/client healthcare priorities and care delivery challenges from healthcare professionals' perspectives leading to improved responses that address discriminatory practices and institutional racism. This project aimed to review accessibility and usability of the existing Managing Two Worlds Together (MTWT) patient journey mapping tools and resources, and develop new Health Journey Mapping (HJM) tools and resources. Method Four repeated cycles of collaborative participatory action research were undertaken using repeated cycles of look and listen, think and discuss, take action together. A literature search and survey were conducted to review accessibility and usability of MTWT tools and resources. First Nations patients and families, and First Nations and non-First Nations researchers, hospital and university educators and healthcare professionals (end users), reviewed and tested HJM prototypes, shaping design, format and focus. Results The MTWT tool and resources have been used across multiple health care, research and education settings. However, many users experienced initial difficulty engaging with the tool and offered suggested improvements in design and usability. End user feedback on HJM prototypes identified the need for three distinct mapping tools for three different purposes: clinical care, detailed care planning and strategic mapping, to be accompanied by comprehensive resource materials, instructional guides, videos and case study examples. These were linked to continuous quality improvement and accreditation standards to enhance uptake in healthcare settings. Conclusion The new HJM tools and resources effectively map diverse journeys and assist recognition and application of strengths-based, holistic and culturally safe approaches to health care.

How to code gerunds in constructivist grounded theory research: an example.

BACKGROUND: Coding for gerunds is useful in developing theory in grounded theory. However, it can be confusing for the novice researcher to recognise these words, which consider actions more abstractly. AIM: To explain how to identify, analyse and code gerunds, using the example of a constructivist grounded theory study investigating the design of operating rooms. DISCUSSION: Coding for gerunds helped to illustrate participants' actions and sequences in the example study and added depth to the researcher's understanding of certain topics. CONCLUSION: Coding gerunds can improve the insights obtained in grounded theory studies. IMPLICATIONS FOR PRACTICE: This article may encourage nurse researchers to focus on actions to add depth to their qualitative analyses.

The emergence of cultural safety within kidney care for Indigenous Peoples in Australia.

Cultural safety is increasingly recognised as imperative to delivering accessible and acceptable healthcare for First Nations Peoples within Australia and in similar colonised countries. A literature review undertaken to inform the inaugural Caring for Australians with Renal Insufficiency (CARI) guidelines for clinically and culturally safe kidney care for Aboriginal and Torres Strait Islander peoples revealed a timeline of the emergence of culturally safe kidney care in Australia. Thirty years ago, kidney care literature was purely biomedically focused, with culture, family and community viewed as potential barriers to patient 'compliance' with treatment. The importance of culturally informed care was increasingly recognised in the mid-1990s, with cultural safety within kidney care specifically cited from 2014 onwards. The emergence timeline is discussed in this paper in relation to the five principles of cultural safety developed by Maori nurse Irihapeti Ramsden in Aotearoa/New Zealand. These principles are critical reflection, communication, minimising power differences, decolonisation and ensuring one does not demean or disempower. For the kidney care workforce, culturally safe care requires ongoing critical reflection, deep active listening skills, decolonising approaches and the eradication of institutional racism. Cultural safety is the key to truly working in partnership, increasing Indigenous Governance, respectful collaboration and redesigning kidney care.

Patient Journey Mapping: emerging methods for understanding and improving patient experiences of health systems and services.

Patient journey mapping is an emerging field of research that uses various methods to map and report evidence relating to patient experiences and interactions with healthcare providers, services and systems. This research often involves the development of visual, narrative, and descriptive maps or tables, which describe patient journeys and transitions into, through and out of health services. This methods corner paper presents an overview of how patient journey mapping has been conducted within the health sector, providing cardiovascular examples. It introduces six key steps for conducting patient journey mapping and describes the opportunities and benefits of using patient journey mapping and future implications of using this approach.

Recommendations for culturally safe clinical kidney care for First Nations Australians: a guideline summary.

INTRODUCTION: First Nations Australians display remarkable strength and resilience despite the intergenerational impacts of ongoing colonisation. The continuing disadvantage is evident in the higher incidence, prevalence, morbidity and mortality of chronic kidney disease (CKD) among First Nations Australians. Nationwide community consultation (Kidney Health Australia, Yarning Kidneys, and Lowitja Institute, Catching Some Air) identified priority issues for guideline development. These guidelines uniquely prioritised the knowledge of the community, alongside relevant evidence using an adapted GRADE Evidence to Decision framework to develop specific recommendations for the management of CKD among First Nations Australians. MAIN RECOMMENDATIONS: These guidelines explicitly state that health systems have to measure, monitor and evaluate institutional racism and link it to cultural safety training, as well as increase community and family involvement in clinical care and equitable transport and accommodation. The guidelines recommend earlier CKD screening criteria (age ≥ 18 years) and referral to specialists services with earlier criteria of kidney function (eg, estimated glomerular filtration rate [eGFR], ≤ 45 mL/min/1.73 m2 , and a sustained decrease in eGFR, > 10 mL/min/1.73 m2 per year) compared with the general population. CHANGES IN MANAGEMENT AS RESULT OF THE GUIDELINES: Our recommendations prioritise health care service delivery changes to address institutional racism and ensure meaningful cultural safety training. Earlier detection of CKD and referral to nephrologists for First Nations Australians has been recommended to ensure timely implementation to preserve kidney function given the excess burden of disease. Finally, the importance of community with the recognition of involvement in all aspects and stages of treatment together with increased access to care on Country, particularly in rural and remote locations, including dialysis services.

Women's perspectives on disrespect and abuse during facility-based childbirth in Ethiopia: a qualitative study.

BACKGROUND: Disrespect and abuse violates women's basic human rights and autonomy and can traumatize women who are already in a vulnerable position during childbirth and deter them from utilizing skilled care for future childbirth. This study explored women's perspectives on the acceptability of disrespect and abuse during facility-based childbirth in Ethiopia. METHODS: A qualitative descriptive design using five focus group discussions and fifteen in-depth, semi-structured, interviews was conducted with women between October 2019 to January 2020 in north Showa zone of Oromia region, central Ethiopia. Using purposive sampling, women who had given birth at public health facilities of North Showa zone during the twelve months preceding data collection were recruited, regardless of birth outcome. Inductive thematic analysis using Open Code software was used to explore the perspectives of participants. RESULTS: While women reject disrespectful and abusive acts during childbirth generally, they may consider some disrespectful acts as acceptable and or necessary under certain circumstances. Four emerging themes were identified. (1) Disrespect and abuse is not acceptable, (2) Disrespectful and abusive actions are acceptable only if intended to save lives, (3) Disrespectful and abusive actions are an accepted part of everyday practice to prevent complications and adverse outcomes, (4) Disrespectful and abusive actions are necessary to discipline disobedient women. CONCLUSION: Women's perceptions of disrespectful and abusive acts of care providers is deeply rooted within the context of violence in Ethiopia and the societal hierarchies that have systematically disempowered women. Given the pervasiveness of disrespect and abusive actions during childbirth, policymakers, clinical managers and care providers must take these essential contextual and societal norms into account and devise comprehensive clinical interventions that addresses the root causes.

Military Healthcare Ethics: Making It Relevant to the Whole Military Care Team.

This article notes the significant increase in academic papers and policy guidance on the subject of ethical practice in military healthcare over the past two decades. This is usually within the domain of "military medical ethics," linking medical ethics as applied to the medical profession (doctors) with ethics as applied within the military (primarily from the perspective of officers). This article argues that this, highly elitist, perspective disenfranchises the majority of the military healthcare team who are nurses and allied health professionals and serve across the entire rank spectrum. We suggest that the subject should be reframed under the banner "military healthcare ethics" to include the concepts within military medical ethics but to emphasize the obligations of all military health professionals to comply with legal, regulatory, and ethical guidance for the practice of healthcare in the military environment. We recommend that the subject should be included in the curricula for education and training for all military health professions across their whole career.

Reporting and conducting patient journey mapping research in healthcare: A scoping review.

AIM: To identify how patient journey mapping is being undertaken and reported. DESIGN: A scoping review of the literature was undertaken using JBI guidance. DATA SOURCES: Databases were searched in July 2021 (16th-21st), including Ovid's Medline, Embase, Emcare and PsycINFO; Scopus; Web of Science Core Collection, the Directory of Open Access Journals; Informit and; ProQuest Dissertations and Theses Global. REVIEW METHODS: Eligible articles included peer-reviewed literature documenting journey mapping methodologies and studies conducted in healthcare services. Reviewers used Covidence to screen titles and abstracts of located sources, and to screen full-text articles. A table was used to extract data and synthesize results. RESULTS: Eighty-one articles were included. An acceleration of patient journey mapping research was observed, with 76.5% (n = 62) of articles published since 2015. Diverse mapping approaches were identified. Reporting of studies was inconsistent and largely non-adherent with relevant, established reporting guidelines. CONCLUSION: Patient journey mapping is a relatively novel approach for understanding patient experiences and is increasingly being adopted. There is variation in process details reported. Considerations for improving reporting standards are provided. IMPACT: Patient journey mapping is a rapidly growing approach for better understanding how people enter, experience and exit health services. This type of methodology has significant potential to inform new, patient centred models of care and facilitate clinicians, patients and health professionals to better understand gaps and strategies in health services. The synthesised results of this review alert researchers to options available for journey mapping research and provide preliminary guidance for elevating reporting quality.

Patient journey mapping to investigate quality and cultural safety in burn care for Aboriginal and Torres Strait Islander children and families - development, application and implications.

BACKGROUND: Quality and safety in Australian healthcare is inequitably distributed, highlighted by gaps in the provision of quality care for Aboriginal and Torres Strait Islander children. Burns have potential for long-term adverse outcomes, and quality care, including culturally safe care, is critical to recovery. This study aimed to develop and apply an Aboriginal Patient Journey Mapping (APJM) tool to investigate the quality of healthcare systems for burn care with Aboriginal and Torres Strait Islander children. STUDY DESIGN: Interface research methodology, using biomedical and cultural evidence, informed the modification of an existing APJM tool. The tool was then applied to the journey of one family accessing a paediatric tertiary burn care site. Data were collected through yarning with the family, case note review and clinician interviews. Data were analysed using Emden's core story and thematic analysis methods. Reflexivity informed consideration of the implications of the APJM tool, including its effectiveness and efficiency in eliciting information about quality and cultural safety. RESULTS: Through application of a modified APJM tool, gaps in quality care for Aboriginal and Torres Strait Islander children and families were identified at the individual, service and system levels. Engagement in innovative methodology incorporating more than biomedical standards of care, uncovered critical information about the experiences of culturally safe care in complex patient journeys. CONCLUSION: Based on our application of the tool, APJM can identify and evaluate specific aspects of culturally safe care as experienced by Aboriginal and Torres Strait Islander peoples and be used for quality improvement.

Resetting the relationship: decolonizing peer review of First Nations' kidney health research.

Kerr et al. interpret the perspectives of First Nations People striving for kidney health within the United States, Canada, Aotearoa (New Zealand), and Australia. The urgency for First Nations Peoples' perspectives and leadership in kidney health care, research, quality reporting, and publishing was confirmed. Advancing this internationally is within scope of high-impact journals, such as Kidney International. Tracking Sovereignty is a proposed framework supporting First Nation Peoples' representation and leadership within journal submission and publication processes.

ORCHID (Outcome Registry for CHIldren with severe congenital heart Disease) a Swiss, nationwide, prospective, population-based, neurodevelopmental paediatric patient registry: framework, regulations and implementation.

INTRODUCTION: Congenital heart disease (CHD) is the most frequent birth defect. As survival has significantly improved, attention has turned to neurodevelopmental outcomes of children undergoing heart surgery in early infancy. Since multiple risk factors contribute to neurodevelopmental alterations, a nationwide registry collecting data on medical characteristics, interventions, clinical course and neurodevelopment until school-age is needed to improve the quality of management, identify risk- and protective factors affecting neurodevelopment, and facilitate multicentre trials. METHODS AND ANALYSIS: The Swiss Outcome Registry for CHIldren with severe congenital heart Disease (ORCHID) is a nationwide, prospective, population-based patient registry developed (1) to collect baseline characteristics and clinical data of CHD patients operated with bypass-surgery or hybrid procedures in the first 6 weeks of life in Switzerland, (2) to monitor long-term neurodevelopment, and (3) to relate clinical characteristics and neurodevelopment to identify risk and protective factors in these children. This registry started data collection relating to pregnancy, birth, preoperative course, catheter-based and surgical treatment, postoperative course and reinterventions in 2019. The primary outcome includes standardised neurodevelopmental assessments at 9 to 12 months, 18 to 24 months and 5.5 to 6 years. We expect to include 80 to 100 children per year. Correlation and regression analyses will be used to investigate risk- and protective factors influencing neurodevelopment. ETHICS AND DISSEMINATION OF RESULTS: Swiss ORCHID received support by the Accentus Charitable Foundation, the Anna Mueller Grocholoski Stiftung, the Swiss Society of Paediatric Cardiology, the Verein Kinderherzforschung, and the Corelina - Stiftung für das Kinderherz, and was approved by the cantonal ethics committees. Findings will be presented at national and international scientific meetings, and published in peer-reviewed journals. Results will also be shared with patient organizations, primary health care providers, and public health stakeholders to ensure a widespread dissemination of the results.

How social media data are being used to research the experience of mourning: A scoping review.

BACKGROUND: Increasingly, people are using social media (SM) to express grief, and researchers are using this data to investigate the phenomenon of mourning. As this research progresses, it is important to understand how studies are being conducted and how authors are approaching ethical challenges related to SM data. OBJECTIVE: The aim of this review was to explore how SM data are being used to research experiences of mourning through the following questions: a) 'Which topics related to mourning are being studied?'; b) 'What study designs have been used to analyse SM data'; c) 'What type of data (natural or generated) have been used?'; and d) 'How are ethical decisions being considered?'. METHODS: The JBI Scoping Review methodology guided this review. Eligibility criteria were determined using the PCC framework, and relevant key words and phrases derived from these criteria were used to search eight databases in September 2021 (CINAHL, Embase, LILACS, OpenGrey, ProQuest, PsycINFO, PubMed and Scopus). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines were used to report the results of this review. RESULTS: Database searches resulted in 3418 records, of which, 89 met eligibility criteria. Four categories of grief and mourning were identified. Most records were qualitative in nature and used natural data. Only 20% of records reported ethics approval by an Institutional Review Board, with several including measures to protect participants, for example, using pseudonyms. CONCLUSIONS: This unique review mapped the diverse range of mourning-related topics that have been investigated using SM data and highlighted the variability in approaches to data analysis. Ethical concerns relating to SM data collection are identified and discussed. This is an emerging and rapidly changing field of research that offers new opportunities and challenges for exploring the phenomenon of mourning.

Aboriginal patients driving kidney and healthcare improvements: recommendations from South Australian community consultations.

OBJECTIVE: To describe the experiences, perceptions and suggested improvements in healthcare identified by Aboriginal patients, families and community members living with kidney disease in South Australia. METHODS: Community consultations were held in an urban, rural and remote location in 2019 by the Aboriginal Kidney Care Together - Improving Outcomes Now (AKction) project and Kidney Health Australia. Consultations were co-designed with community members, using participatory action research, Yarning, Dadirri and Ganma Indigenous Methodologies. Key themes were synthesised, verified by community members and shared through formal and community reports and media. RESULTS: Aboriginal participants identified the importance of: family and community and maintaining their wellbeing, strength and resilience; the need for prevention and early detection that is localised, engages whole families and prevents diagnosis shock; better access to quality care that ensures Aboriginal people can make informed choices and decisions about their options for dialysis and transplantation, and; more Aboriginal health professionals and peer navigators, and increased responsiveness and provision of cultural safety care by all kidney health professionals. CONCLUSION: Aboriginal community members have strong and clear recommendations for improving the quality and responsiveness of health care generally, and kidney care specifically. IMPLICATIONS FOR PUBLIC HEALTH: Aboriginal people with lived experience of chronic conditions wish to significantly inform the way care is organised and delivered.

Real Ways of Working Together: co-creating meaningful Aboriginal community consultations to advance kidney care.

OBJECTIVE: To describe a process of meaningful Aboriginal community engagement that repositioned and valued community members' knowledge(s) and lived experiences while strengthening relationships, research processes and outcomes. BACKGROUND: Aboriginal Australians have the oldest continuous culture in the world, yet due to effects of colonisation, experience some of the world's poorest health outcomes. The AKction [Aboriginal Kidney Care Together - Improving Outcomes Now] project brought together Aboriginal people with lived experience of kidney disease, clinicians and researchers to improve kidney care. METHODOLOGY: Using Aboriginal methodologies of Ganma and Dadirri within community-based participatory action research (cb-PAR), a core advisory group of Aboriginal people with lived experiences of kidney disease worked closely with clinicians and researchers. RESULTS: Three community consultation workshops that deeply valued Aboriginal knowledge(s) were co-created. Community members formed a reference group, established partnerships and influenced health research, policy and service provision. Non-Indigenous researchers engaged in critical self-reflection and levelling of Western-Aboriginal and clinician-consumer power imbalances. CONCLUSIONS: Deeply respectful community engagement is possible through co-creation and cb-PAR. It results in multiple positive impacts and beneficial relationships between community members, clinicians and academics. IMPLICATIONS FOR PUBLIC HEALTH: Meaningful consultation with Aboriginal communities guides culturally safe research processes, health policy and service delivery.

Naloxegol versus Alvimopan for Enhancing Postoperative Recovery following Radical Cystectomy for Bladder Cancer.

INTRODUCTION: µ-Opioid-receptor antagonists are a standard component of enhanced recovery after surgery (ERAS) pathways following radical cystectomy (RC) as they reduce ileus and shorten length of stay (LOS). Prior studies have used alvimopan; however, naloxegol is a less expensive medication in the same class. We compared differences in postoperative outcomes between patients receiving alvimopan or naloxegol following RC. METHODS: We retrospectively reviewed all patients undergoing RC over 20 months at an academic center during which standard practice transitioned from using alvimopan to naloxegol, while maintaining all other components of our ERAS pathway. We utilized bivariate comparisons as well as negative binomial and logistic regression to compare return of bowel function, rates of ileus and LOS following RC. RESULTS: Of 117 eligible patients, 59 (50%) received alvimopan and 58 (50%) received naloxegol. There were no differences in baseline clinical, demographic or perioperative factors. Median postoperative LOS was 6 days in each group (p=0.3). Time to flatus (2 versus 2 days, p=0.2) and ileus (14% versus 17%, p=0.6) were similar between the alvimopan and naloxegol groups, respectively. In multivariable models controlling for patient and surgical factors, µ-opioid antagonist agent was associated with neither LOS nor ileus. Cost difference was -$344.20/day, equivalent to a $2,065.20 savings over a 6-day hospital stay with naloxegol. CONCLUSIONS: In patients undergoing RC managed with a standard ERAS pathway, there were no differences in postoperative recovery based on the use of alvimopan versus naloxegol. Substitution of naloxegol for alvimopan may allow for significant cost savings without compromising outcomes.

Reporting of patient journey mapping in current literature: a scoping review protocol.

OBJECTIVE: This scoping review will assess the literature that documents or utilizes patient journey mapping methodologies in health care settings. It will also examine the reporting processes of studies that use this methodology. INTRODUCTION: Health care systems are complex and can be challenging for patients to navigate. Using patient journey mapping as a research method promotes a deeper understanding of patient experiences when navigating these systems. Patient journey mapping provides valuable insights into where systems are working well, where gaps in care exist, and how the system could respond to these gaps. INCLUSION CRITERIA: This review will consider peer-reviewed articles and publicly available academic literature documenting patient journey mapping methodologies. The review will also consider studies providing guidance and recommendations on how to report patient journey mapping studies in health care services and systems. METHODS: The proposed review will follow JBI guidance for scoping reviews. The following databases will be searched: MEDLINE, Embase, Emcare, PsycINFO, Scopus, Web of Science Core Collection, the Directory of Open Access Journals, Informit, and ProQuest Dissertations and Theses Global. The search will not be limited to year of publication but will be limited to studies reported in English. The PRISMA-ScR extension will be used to document the literature search. Two reviewers will screen titles, abstracts, and full-text articles. An extraction table will be used to extract relevant data from all included articles and to facilitate data analysis.

Perspectives on rehabilitation for Aboriginal people with stroke: a qualitative study.

BACKGROUND: Aboriginal and Torres Strait Islander (hereinafter respectfully termed Aboriginal) people have a greater incidence of stroke at a younger age than non-Indigenous people in Australia. The needs and preferences of Aboriginal people for rehabilitation and longer-term support remain largely unknown. OBJECTIVES: To identify the long-term rehabilitation needs of Aboriginal people who have a stroke, from the perspectives of Aboriginal persons with stroke and health care providers. METHODS: Aboriginal people who had experienced stroke in the previous three years were interviewed to obtain their experiences of rehabilitation care. Health professionals who provided care in each of six designated hospitals and nearby community health sites were involved in focus groups and individual interviews. Information obtained was thematically analyzed separately for Aboriginal people with stroke and health professionals, and compared using Nvivo. RESULTS: Among six Aboriginal people with stroke and 78 healthcare providers, four main themes emerged: the importance of family; variable access to services; the impact of stroke on Aboriginal peoples' lives; and making positive choices. Communication and involvement of family was highlighted as essential for a shared understanding, particularly when making decisions about participating in short and long-term rehabilitation. Co-morbidities, conflicting priorities, and inadequate or inflexible services and transport compounded issues with changing life roles. Stories of resilience were also shared. CONCLUSIONS: Aboriginal people report making positive lifestyle changes, but experience significant unmet rehabilitation needs. Addressing issues of communication, advocacy and flexible delivery should improve some of the shortfalls in service provision, particularly in regional and remote areas.