Culturally Safe Care Barriers and Facilitators in Organ Transplantation and Donation According to First Nations and Health Professionals in Quebec, Canada.

Introduction: First Nations are most at risk of developing end-stage kidney disease. Kidney transplantation is the best treatment option for these patients; however, First Nations donors are underrepresented. The aim of this study was to describe and understand barriers and facilitators of culturally safe organ transplantation and donation from the perspective of First Nations and Health Professionals in the Province of Quebec, Canada. Methods/Approach: This was a qualitative descriptive study using the decolonizing Two-Eyed Seeing approach. The sample consisted of First Nations people and health professionals living in Quebec, Canada, who have had an experience of organ transplantation or donation. Semi-structured interviews were conducted between May and September 2021 with 11 people, including 5 healthcare professionals and 6 First Nations people. Findings: This study enrolled 11 participants. Several individual and contextual factors influencing culturally safe organ transplantation and donation among First Nations people were identified: language barrier, impacts of relocation, lack of knowledge about transplantation, mistrust of the healthcare system, family support and accompaniment, and transplant testimonials. Discussion: This study identified several avenues for reinforcing culturally safe transplantation and donation among First Nations, including the presence of a companion in medical consultations, focusing on access to culturally safe accommodation and sharing transplant testimonials. Further work in partnership with First Nations is needed to improve access to culturally safe organ transplantation.

A qualitative evaluation of rural and provincial surgery wananga to enhance cultural safety among surgical registrars in Taranaki, New Zealand.

BACKGROUND: The Royal Australasian College of Surgeons (RACS) recently instituted cultural safety and cultural competency as its 10th competency with formalized cultural safety training yet to be instituted. Wananga are Indigenous Maori teaching institutions that can be used contemporarily for cultural safety training. METHODS: In 2022, surgical registrars based at Taranaki Base Hospital (TBH) held in-hospital wananga ranging from 1 to 3 h focussed on cultural safety, professionalism and wellbeing. This study explores the perspectives of these registrars who attended wananga using a Kaupapa Maori aligned methodological stance and interpretive phenomenological analysis. RESULTS: Twenty-six wananga were held from March 22nd 2022 to January 30th 2023. Six registrars provided their perspectives with four major themes emerging from their stories including: cultural safety; unity; time, place and person; and a new era. Registrars valued the wananga which was scheduled for Friday afternoons after daily clinical duties. Wananga facilitated unity and understanding with registrars being able to reflect on the context within which they are practicing - describing it as a new era of surgical training. 'Time' was the biggest barrier to attend wananga however, the number of wananga held was testament to the commitment of the registrars. CONCLUSIONS: Regular wananga set up by, and for, surgical registrars cultural safety development is feasible and well subscribed in a rural or provincial NZ setting. We present one coalface method of regular cultural safety training and development for surgical registrars and trainees in NZ.

Understanding the Indigenous experience with radiation oncology in Treaty 6, 7, 8 (Alberta), Canada to inform health system transformation.

INTRODUCTION: Rates of common cancers are continuously increasing among Indigenous peoples and are above the incidence rates of non-Indigenous Canadians. When considering the intersecting social determinants of health such as culture, geography, funding, and access to basic health services, these all contribute to the unique cancer burden faced by Indigenous people. Indigenous patients sometimes feel alienated by the word "cancer", intimidated in the oncology setting and often avoid or delay seeking care, bypass screening and preventative care, and cease prescribed treatment before it is finished. Providing culturally competent, safe care to improve Indigenous health outcomes have been suggested and prioritized in health care systems across Canada. METHODS: Using an Indigenous methodology, sharing circles were held in Northern Alberta, Canada. Five Indigenous survivors of cancer and two Indigenous caregivers shared their experiences with oncology treatment in the radiation therapy centre. Results were transcribed verbatim and thematic analysis was conducted. RESULTS: This resulted in four main themes (1) historical and cultural understandings (2) reduce systemic harm by having dedicated Indigenous staff, cultural competency, and Indigenous specific supports (3) meaningful time commitment and relationship building (4) importance of kinship and Indigenous-centred, family-and-patient-centred care. These themes fed into the development of nine recommendations for policy and decision makers to improve cultural safety in the Alberta radiation therapy centres. CONCLUSION: Support for Indigenous patients and caregivers is essential to improve care in the radiation therapy centres. The findings from this work will support recommendations for health decision and policy makers within radiation therapy centres, which may be transferable to other centres within oncology and health.

Indigenous students' experiences of being taught indigenous health.

BACKGROUND: Increasing the numbers of Indigenous health professionals is an international priority to enhance health outcomes for Indigenous communities. It is also incumbent on academics to ensure all graduates are culturally safe to work with Indigenous Peoples, and that accredited health degrees contain appropriate Indigenous content, improving the cultural competence of the registered health workforce. However, little current research investigates Indigenous tertiary students' experiences of learning about Indigenous health. AIM: To explore Indigenous students' experiences of being taught Indigenous health. DESIGN: This study employed an online survey (16 % response rate) developed to evaluate student's beliefs, attitudes and learning experiences following operationalisation of a university Indigenous Graduate Attribute. An Aboriginal researcher also conducted Yarning Circles with Indigenous students as a culturally appropriate means to deepen insight into their experiences of studying Indigenous health topics alongside non-Indigenous peers. SETTING: A large urban Australian university. PARTICIPANTS: Twelve Indigenous students from four health disciplines completed the anonymous survey. Five Indigenous midwifery students participated in a Yarning Circle. METHODS: Survey data were analysed descriptively using SPSS version 27. Qualitative data from Yarning Circle transcripts were analysed thematically from an inductive Indigenous standpoint. RESULTS: Results from the survey demonstrated unanimous agreement that all health students should learn about Indigenous Peoples' health and cultures. However, most participants agreed that there needed to be more content on Indigenous knowledges, derived from Indigenous authors, researchers, and community presenters. The Yarning Circle yielded rich discussion of students' experiences, explored across three key themes and associated sub-themes. Themes were: When your culture is content; Being an Indigenous student; and Sources of strength and support as Indigenous students. CONCLUSIONS: Findings indicate the importance of framing Indigenous content, incorporating Indigenous knowledge into curricula, ensuring Cultural Safety in classrooms with both Indigenous and non-Indigenous students, and supporting Indigenous students to excel.

Implementation of the optometry Aboriginal and Torres Strait Islander health curriculum framework.

CLINICAL RELEVANCE: There is now an Optometry Council of Australia and New Zealand (OCANZ) accreditation requirement for Australian and Aotearoa New Zealand optometry programs to ensure students can provide culturally safe care for First Nations Peoples. To assist programs, OCANZ developed the Optometry Aboriginal and Torres Strait Islander Health Curriculum Framework (Optometry Framework). BACKGROUND: The objective of this study was to evaluate early progress towards the implementation. METHODS: All seven Australian optometry programs were invited to complete a modified version of the OCANZ curriculum mapping tool. Where available, online unit outlines were reviewed to verify and supplement the data. Curriculum maps were synthesised using qualitative content analysis. RESULTS: None of the five participating programs had a standalone Aboriginal and Torres Strait Islander health unit; instead, programs were integrating content into core units. Only 25% of the units with relevant content had a directly related learning outcome. All programs had at least some content that was either directly or indirectly related to each of the Optometry Framework themes, and included some content related to novice and intermediate levels of learning. Four programs had content related to entry to practice levels of learning. The average total duration of directly related content in programs (excluding clinical placements) was 18 hours. Not all programs offered an Aboriginal and Torres Strait Islander health setting clinical placement opportunity. Directly related assessment was minimal in most programs, where the format was predominantly reflective journals or questions within written examinations. CONCLUSION: Progress has been made in implementing the Optometry Framework; however, further efforts are required. Programs need to integrate additional directly related learning outcomes, content (particularly entry to practice level learning), and assessment. Further curriculum enhancements will improve the likelihood of optometry students acquiring the necessary capabilities for providing culturally safe care.

Respiratory diphtheria in the time of Omicron.

Abstract: Diphtheria is a potentially fatal bacterial infection caused by toxin-producing strains of corynebacteria, most often Corynebacterium diphtheriae and less commonly Corynebacterium ulcerans. Incidence of the disease has fallen significantly since the introduction of vaccination programs; it is now rare in countries with high vaccination coverage such as Australia. This article presents the most recent respiratory cases of diphtheria in two children in New South Wales-the first locally acquired childhood cases in Australia in 30 years-and discusses potential contributing factors. These encompass the lack of clinical awareness and the delays in laboratory diagnosis in regional laboratories. The cases also highlight the problem of vaccine hesitancy and the role that primary carers play in addressing these anxieties. While clinical management of the cases progressed well, factors in the public health responses were complicated by access to appropriate care and by delays in antibiotic sensitivity profiles. The public health response to these cases raises important considerations for clinicians and public health practitioners, including preparedness for rare and re-emerging diseases, the need for culturally safe environments and the importance of addressing vaccine hesitancy. Preparedness requires consideration of the capacity of regional health systems with fewer resources and of how public health departments can support response to multiple crises. Preparedness also relies on access to necessary diagnostic laboratory resources, on up-to-date guidelines, and on maintaining awareness among clinicians for these rare infections.

'Humility, Concern, Respect': A Qualitative Study Exploring Parent Perspectives on a Pediatrician's Role in Addressing Racism.

OBJECTIVE: To explore racially minoritized families' perceptions on how, and if, physicians should address children's racial identity and concepts of racism within clinical settings. STUDY DESIGN: Parents of racially minoritized children, ages 5 through 18, were interviewed to explore experiences with racial identity formation, discrimination, and the extent to which they wanted pediatricians to address these topics. Children were included at the discretion of their parents. Interviews were transcribed, coded, and analyzed through a critical race theory lens based in constructivist grounded theory. RESULTS: Parents encouraged their children to embrace their racial identities but also wanted to shield them from negative experiences of racism to preserve identity safety. Parents felt pediatricians should address racial issues in a manner specific to their child's situation. Thoughtful inclusion of race-related questions, whether in discussion or on questionnaires, is essential to prevent tension in a therapeutic relationship. There was no consensus on the use of preclinical screening. Instead, families highlighted the importance of embracing humility, trust, and respect. CONCLUSIONS: Participant families have preferences for approaches to address the effects of racism on their children's health. Pediatricians should understand the importance of identity safety and approach their discussions with cultural humility, which includes self-reflection, empathy, active listening, and flexible negotiation. Above all, pediatricians need to create a safe environment for appropriate discussion of these issues.

The cultural safety of research reports on primary healthcare use by Indigenous Peoples: a systematic review.

INTRODUCTION: Community-driven research in primary healthcare (PHC) may reduce the chronic disease burden in Indigenous peoples. This systematic review assessed the cultural safety of reports of research on PHC use by Indigenous peoples from four countries with similar colonial histories. METHODS: Medline, CINAHL and Embase were all systematically searched from 1st January 2002 to 4th April 2023. Papers were included if they were original studies, published in English and included data (quantitative, qualitative and/or mixed methods) on primary healthcare use for chronic disease (chronic kidney disease, cardiovascular disease and/or diabetes mellitus) by Indigenous Peoples from Western colonial countries. Study screening and data extraction were undertaken independently by two authors, at least one of whom was Indigenous. The baseline characteristics of the papers were analyzed using descriptive statistics. Aspects of cultural safety of the research papers were assessed using two quality appraisal tools: the CONSIDER tool and the CREATE tool (subset analysis). This systematic review was conducted in accordance with the Assessing the Methodological Quality of Systematic Reviews (AMSTAR) tool. RESULTS: We identified 35 papers from Australia, New Zealand, Canada, and the United States. Most papers were quantitative (n = 21) and included data on 42,438 people. Cultural safety across the included papers varied significantly with gaps in adequate reporting of research partnerships, provision of clear collective consent from participants and Indigenous research governance throughout the research process, particularly in dissemination. The majority of the papers (94%, 33/35) stated that research aims emerged from communities or empirical evidence. We also found that 71.4% (25/35) of papers reported of using strengths-based approaches by considering the impacts of colonization on reduced primary healthcare access. CONCLUSION: Research on Indigenous PHC use should adopt more culturally safe ways of providing care and producing research outputs which are relevant to community needs by privileging Indigenous voices throughout the research process including dissemination. Indigenous stakeholders should participate more formally and explicitly throughout the process to guide research practices, inclusive of Indigenous values and community needs.

Ka Malu a Wa'ahila: Cultivating cultural safety for Native Hawaiian students in university behavioral health.

Ka Malu a Wa'ahila, an Indigenous-centered and student-informed program, was established in 2022 to meet the growing behavioral health needs of Native Hawaiian college students at the University of Hawai'i at Manoa. Utilizing a cultural safety foundation and relying on the wisdom of community voices articulated by the Pilinaha framework, clinicians provide prevention, direct intervention, and outreach services. As the program continues to evolve, future plans include expanding to other Pacific Islanders and developing an additional layer of systemic change through building an Indigenous behavioral health training pathway and training curriculum for clinicians serving Native Hawaiian and Pacific Islander (NHPI) communities.

Discharge against medical advice in rural and remote emergency departments: views of healthcare providers.

INTRODUCTION: The aim of the study was to explore, in one remote hospital, emergency department healthcare providers' experience and perceptions of the factors surrounding a patient's decision to discharge against medical advice (DAMA). The secondary objective was to gain insight into staff experiences of the current protocols for managing DAMA cases and explore their recommendations for reducing DAMA incidence. METHODS: This was a cross-sectional study involving a survey and semi-structured interviews exploring healthcare providers' (n=19) perceptions of factors perceived to be influencing DAMA, current practice for managing DAMA and recommendations for practice improvements. Health professionals (doctors, nurses, Aboriginal Health Workers) all worked in the emergency department of a remote community hospital, Queensland, Australia. Responses relating to influencing factors for DAMA were provided on a three-point rating scale from 'no influence/little influence' to 'very strong influence'. DAMA management protocol responses were a three-point rating scale from 'rarely/never' to 'always'. Semi-structured interviews were conducted after the survey and explored participants' perceptions in greater detail and current DAMA management protocol. RESULTS: Feedback from the total of 19 participants across the professions presented four prominent yet interconnected themes: patient, culture, health service and health provider, and health literacy and education-related factors. Factors that were perceived to have a strong influence on DAMA events included alcohol and drug abuse (100%), a lack of culturally sensitive healthcare services (94.7%), and family commitments or obligations (89.5%). Healthcare provider recommendations for preventing DAMA presented themes of right communication, culturally safe care (right place, right time) and the right staff to support DAMA prevention. The healthcare providers described the pivotal role the Indigenous Liaison Officer (ILO) plays and the importance of this position being filled. CONCLUSION: DAMA is a multifaceted issue, influenced by both personal and hospital system-related factors. Participants agreed that the presence of ILO and/or Aboriginal Health Workers in the emergency department may reduce DAMA occurrences for Indigenous Australians who are disproportionately represented in DAMA rates, particularly in rural and remote regions of Australia.

Maori experiences of physical rehabilitation in Aotearoa New Zealand: a scoping review.

PURPOSE: The purpose of this review was to explore what is currently known about Maori experiences of physical rehabilitation services in Aotearoa New Zealand. METHODS: A scoping review was undertaken following steps described by the Joanna Briggs Institute. Databases and grey literature were searched for qualitative studies that included descriptions of Maori consumer experiences in their encounters with physical rehabilitation. Data relating to study characteristics were synthesised. Qualitative data were extracted and analysed using reflexive thematic analysis. RESULTS: Fourteen studies were included in this review. Four themes were generated that describe Maori experiences of rehabilitation. The first theme captures the expectations of receiving culturally unsafe care that become a reality for Maori during rehabilitation. The second theme describes whanau as crucial for navigating the culturally alien world of rehabilitation. The third theme offers solutions for the incorporation of culturally appropriate Maori practices. The final theme encompasses solutions for the provision of rehabilitation that empowers Maori. CONCLUSIONS: This scoping review highlights ongoing inequities experienced by Maori when engaging with rehabilitation services. Strategies for facilitating culturally safe rehabilitation for Maori have been proposed. It is essential that rehabilitation clinicians and policymakers implement culturally safe approaches to rehabilitation with a view to eliminating inequities in care provision and outcomes for Maori.

Maori experiences of physical rehabilitation are comparable to the negative experiences they have in other health contexts.Although there are pockets of optimism, the results of this scoping review indicate that the delivery of culturally safe rehabilitation is inconsistent in Aotearoa New Zealand.A whanau-centred approach to rehabilitation is key to recovery and healing for Maori.There are opportunities for clinicians to disrupt the culturally unsafe care experienced by Maori by facilitating rehabilitation that normalises Maori cultural practices and embeds Maori approaches to health and wellbeing.

Culturally responsive care in haemodialysis: A scoping review.

AIM: To describe how clinicians provide culturally responsive care to culturally diverse people with kidney failure in haemodialysis centres. BACKGROUND: Culturally diverse individuals receiving in-centre maintenance haemodialysis have unique cultural needs. Unmet cultural needs can impair and profoundly affect their experiences. Given culturally responsive care has the potential to enhance the experiences of culturally diverse people, it is vital to understand how clinicians provide culturally responsive care. METHOD: A scoping review was undertaken using Arksey and OMalleys framework. Five databases: Medline and CINAHL Complete (EBSCO), PsycINFO, Embase (OVID) and ProQuest Theses and Dissertation databases were searched for research literature published in English between 1990 and 2023. Narrative synthesis was used to synthesise the data. RESULTS: From the 17,271 records screened, 17 papers reporting 14 studies met the inclusion criteria. Narrative synthesis revealed two themes: (i) communication enablers and barriers including linguistic differences, professional and lay interpreter use; and (ii) the importance of culture, which encompassed acknowledging cultural priorities, accommodating cultural food preferences and access to cultural training. CONCLUSION: While competing priorities associated with haemodialysis may be a challenge for clinicians, recognising the significance of cultural care needs and accommodating them in care is important. Demonstrating respect towards cultural diversity and providing person-centred care by facilitating the unique cultural needs of people with kidney failure in haemodialysis is imperative. RELEVANCE TO CLINICAL PRACTICE: Culturally responsive care is complex and multidimensional. Individuals' cultural care needs should be acknowledged, respected, and accommodated in care. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. The study protocol was registered in the Open Science Framework. https://osf.io/uv8g3.

Maori nurse practitioners: The intersection of patient safety and culturally safe care from an Indigenous lens.

BACKGROUND: Dynamic and complex health systems require innovative and adaptive solutions to support patient safety and achieve equitable health outcomes for Indigenous populations. Understanding the ways by which Indigenous (and specifically Maori) nurse practitioners (NPs) practice patient safety is key to enhancing Indigenous health outcomes in predominantly westernized healthcare systems. AIM: To describe Maori NPs perspectives on patient safety when caring for Maori and understand how Maori NPs deliver safe health care. METHODOLOGY: A group of five Maori NPs worked alongside a Maori nurse researcher to explore their perceptions of patient safety. Together, they held an online hui (focus group) in early 2024. Data were analysed collectively, informed by kaupapa Maori principles, using reflexive thematic analysis. RESULTS: Maori NP experiences, expressions and understandings of patient safety envelop cultural safety and have many facets that are specific to the needs of Maori populations. The three themes showed: (1) Te hanga a te mahi: the intersection of cultural and clinical expertise; (2) Matauranga tuku iho: the knowledge from within, where safe practice was strongly informed by traditional knowledge and cultural practice; (3) Te Ao hurihuri: walking in two worlds, where Maori NPs navigated the westernized health system's policies and practices while acting autonomously to advocate for and deliver culturally safe care. CONCLUSION: The Maori NP lens on patient safety is vital for promoting culturally responsive and effective health care. By recognizing the unique needs of Maori patients and families and incorporating cultural perspectives into practice, Maori NPs contribute to a more comprehensive and inclusive approach to patient safety that goes beyond westernized principles and practices. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Understanding burn injury among Aboriginal and Torres Strait Islander children - results of a two-year cohort study.

BACKGROUND: Despite known inequalities, little is understood about the burden and healthcare experiences of Aboriginal and Torres Strait Islander children who sustain a burn injury and their families. METHODS: The Coolamon Study recruited parents and carers whose children (aged <16 years) were Aboriginal and / or Torres Strait Islander children and had presented to burn units across four Australian states, New South Wales (Sydney), Northern Territory (Darwin), Queensland (Brisbane, Townsville) and South Australia (Adelaide), between 2015 and 2018. Consent was obtained and carers completed baseline and subsequent interviews at 3, 6, 12 and 24 months. Data were collected on the injury event, patient care and safety, sociodemographic factors, health related quality of life (PedsQual), and psychological distress (Kessler K-5). RESULTS: Of the 208 participants, 64 % were male; 26 % were aged less than 2 years and 37 % aged 2-4 years. The most common burn mechanisms were scalds (37 %), contact (33 %) and flame burns (21 %), with more severe burns and flame burns occurring in rural and remote settings. Most carers rated their child's care as either excellent or very good (82 %). Family distress, measured by the K-5, lessened over the 24 months, however the changes were not statistically significant. While 77 % of carers reported that they received enough information, 18 % reported they would have liked more, and 3 % reported no information was provided before treatment. Parents described mixed access to information about the types of support available to them, such as accommodation, meals, travel or cultural support. CONCLUSION: Data from this cohort provide rich new information about risk factors and care received from point of injury through to rehabilitation for Aboriginal and Torres Strait Islander children with burns, providing unique insights into what is needed for appropriate, culturally safe care.

Indigenous maternal and infant outcomes and women's experiences of midwifery care: A mixed-methods systematic review.

BACKGROUND: The impact of midwifery, and especially Indigenous midwifery, care for Indigenous women and communities has not been comprehensively reviewed. To address this knowledge gap, we conducted a mixed-methods systematic review to understand Indigenous maternal and infant outcomes and women's' experiences with midwifery care. METHODS: We searched nine databases to identify primary studies reporting on midwifery and Indigenous maternal and infant birth outcomes and experiences, published in English since 2000. We synthesized quantitative and qualitative outcome data using a convergent segregated mixed-methods approach and used a mixed-methods appraisal tool (MMAT) to assess the methodological quality of included studies. The Aboriginal and Torres Strait Islander Quality Appraisal Tool (ATSI QAT) was used to appraise the inclusion of Indigenous perspectives in the evidence. RESULTS: Out of 3044 records, we included 35 individual studies with 55% (19 studies) reporting on maternal and infant health outcomes. Comparative studies (n = 13) showed no significant differences in mortality rates but identified reduced preterm births, earlier prenatal care, and an increased number of prenatal visits for Indigenous women receiving midwifery care. Quality of care studies indicated a preference for midwifery care among Indigenous women. Sixteen qualitative studies highlighted three key findings - culturally safe care, holistic care, and improved access to care. The majority of studies were of high methodological quality (91% met ≥80% criteria), while only 14% of studies were considered to have appropriately included Indigenous perspectives. CONCLUSION: This review demonstrates the value of midwifery care for Indigenous women, providing evidence to support policy recommendations promoting midwifery care as a physically and culturally safe model for Indigenous women and families.

Culturally responsive occupational therapy practice with First Nations Peoples-A scoping review.

INTRODUCTION: First Nations Peoples consistently demonstrate strength and resilience in navigating systemic health care inequities. Acknowledging racism as a health determinant underscores the urgent need for a counterforce-cultural safety. Indigenous Allied Health Australia (IAHA) contends that with cultural responsiveness, the health workforce can take action to create a culturally safe environment. OBJECTIVE: To explore features of culturally responsive occupational therapy (OT) practice when providing a service with First Nations People and examine alignment of those features with the IAHA Cultural Responsiveness in Action Framework. DESIGN: A systematic scoping review was undertaken using CINAHL, Emcare, MEDLINE, PsychInfo and Scopus databases. Examples of culturally responsive OT practice with First Nations Peoples were mapped to the six IAHA Framework capabilities and confirmed by First Nations co-authors. FINDINGS: OT practice with First Nations Peoples aligned with the six capabilities to varying degrees. The importance of OTs establishing relationships with First Nations People, applying self-reflection to uncover cultural biases, and addressing limitations of the profession's Western foundations was evident. DISCUSSION: Recognising the interrelatedness of the six capabilities, the absence of some may result in a culturally unsafe experience for First Nations People. OTs must acknowledge the leadership of First Nations Peoples by privileging their voices and consider how established practices may reinforce oppressive systems. CONCLUSION: To ensure a culturally safe environment for First Nations People, the OT profession must respect the leadership of First Nations Peoples and address the limitations of the profession's Western foundations to uphold the profession's core value of client-centred care.

An evaluation and refinement of the "Hep B Story" app, tailored to meet the community's cultural needs.

BACKGROUND: Hepatitis B is endemic amongst the Australian Aboriginal population in the Northern Territory. A participatory action research project identified the lack of culturally appropriate education tools and led to the development of the "Hep B Story" app in the Aboriginal language Yolŋu Matha. This paper describes a formal evaluation of the app's first version, which informed improvements and translation into a further ten Aboriginal languages. METHODS: The evaluation employed Participatory Action Research (PAR) principles to work within Indigenous research methodologies and prioritise Indigenous knowledge to improve the app iteratively. Semi-structured interviews and focus groups were conducted across the Northern Territory with 11 different language groups. Local Community Based Researchers and Aboriginal Research team members coordinated sessions. The recorded, translated conversations were transcribed verbatim and thematically analysed using an inductive and deductive approach. RESULTS: Between November 2018 and September 2020, 94 individuals from 11 language groups participated in 25 semi-structured interviews and 10 focus groups. All participants identified as Aboriginal. Most participants felt the app would be culturally appropriate for Aboriginal communities in the Northern Territory and improve knowledge surrounding hepatitis B. The information gathered from these interviews allowed for identifying five main themes: support for app, relationships, concept versus language, shame, and perceptions of images, along with errors that required modification. CONCLUSIONS: A "real-life" evaluation of the app was comprehensively completed using a PAR approach blended with Indigenous research methods. This evaluation allowed us to develop an updated and enhanced version of the app before creating the additional ten language versions. An iterative approach alongside strong community engagement was pivotal in ensuring the app's cultural safety and appropriateness. We recommend avoiding the use of knowledge-based evaluations in an Aboriginal setting to ensure relevant and culturally appropriate feedback is obtained.

When I can be my whole authentic self, I feel safe and know that I belong: a photovoice study exploring what culturally safe pregnancy care is to Karen women of refugee background in Victoria, Australia.

OBJECTIVES: Inequitable pregnancy care experiences and outcomes disproportionately affect refugee background women in Australia. Culturally safe care is essential for achieving health equity, however, cultural safety can only be determined by the person receiving care. To our knowledge, women of refugee background in Australia are yet to be asked what culturally safe pregnancy care is to them. Specifically, this study aimed to explore what culturally safe pregnancy care is to Karen women (from Burma) of refugee background. DESIGN: A photovoice study founded on community-based participatory research principles was undertaken with a Karen community of refugee background living in Victoria, Australia. A community advisory group was established, guiding study design and conduct. Five S'gaw Karen-speaking women with experience of pregnancy care in Australia were invited to take photos within their community. Participants shared their photos and stories with each other in four online discussion groups. RESULTS: Reflexive thematic analysis guided by a critical constructionist lens developed three themes: Building foundations for belonging; cultivating reciprocal curiosity; and storytelling as an expression of self and shared power. These themes sit within the overarching theme When I can be my whole authentic self, I feel safe and know that I belong. CONCLUSION: When Karen women can embrace their cultural and spiritual identity without fear of discrimination, including racism, culturally safe pregnancy care is possible. This study contributes to the design and delivery of maternity services by providing insights that can enhance equitable and culturally safe pregnancy care for Karen women of refugee background.

The multigenerational impact of long QT syndrome: A Gitxsan perspective.

Long QT syndrome (LQTS), a rare cardiac condition that can lead to sudden death, is highly prevalent in First Nations communities of northern British Columbia. In the Gitxsan community of 5500, an estimated 1 in 125 individuals are affected, primarily due to the novel pathogenic variant p.V205M in KCNQ1. Over the past decade, more than 800 Gitxsan individuals received genetic testing and counseling for LQTS through a community-based study. Despite the substantial research characterizing the biological underpinnings of LQTS, there are few studies exploring the lived experiences of families with LQTS, especially those of Indigenous peoples. The goal of this study was to gain a greater understanding of the impact of the genetic confirmation of LQTS in this community, and the impact the condition has on individuals, their families, and the community. A qualitative study was developed in consultation with a local research advisory board and a Talking Circle, a traditional Indigenous format for discussion, was held. Four people who belonged to the same kindred group attended the Talking Circle. This article presents the multigenerational impact that LQTS and genetic diagnosis have through the reflections of one Gitxsan family. LQTS affects identity and family relationships, including those between parents and children, siblings, and even extended family members. Laughter and humor played an important part in coping. The role of family relationships for this Gitxsan family was seen to be critical in managing an LQTS diagnosis. This multigenerational perspective provides key insights into family structure and dynamics which can inform genetic counseling and clinical care. As cultural safety is experienced and therefore defined by the person receiving services, listening to the perspectives and preferences of Indigenous peoples is essential to the delivery of culturally informed care.

The social and organisational factors shaping acceptability of a self-management education and exercise intervention for people with hip or knee osteoarthritis in Greenland.

This study aimed to explore the experiences and perspectives of people with osteoarthritis attending the "Osteoarthritis School" (OA School) in Nuuk, Greenland to generate insights and lessons that can inform the development of self-management education and exercise interventions for people with other lifestyle conditions in a Greenland context. We conducted a qualitative interpretive description (ID) study based on ten semi-structured interviews with people with hip or knee osteoarthritis. Interviews were audio-recorded, transcribed, and coded. Using ID, we identified three themes: 1) perceptions and experiences of how the OA School intervention was organised (time and place); 2) perspectives and experiences of the education and exercise components (social factors, motivation, and education); and 3) significant change stories (physical and mental improvements and increased knowledge of OA). Social and organisational factors, such as working out with peers and the time and place of the intervention, influenced the participants' acceptance of the OA School intervention. Knowledge from this study will help us gain insight into what to address when developing future self-management education and exercise interventions in the Greenlandic healthcare system.