Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review.

BACKGROUND: Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. METHODS: We followed PRISMA guidelines and Arksey and O'Malley's approach for charting and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. RESULTS: We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. CONCLUSIONS: Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children.

Community-based screening and triage connecting First Nations children and youth to local supports: a cross-sectional study.

BACKGROUND: First Nations children in Canada experience health inequities. We aimed to determine whether a self-report health app identified children's needs for support earlier in their illness than would typically occur. METHODS: Children (aged 8 to 18 yr) were recruited from a rural First Nation community. Children completed the Aaniish Naa Gegii: the Children's Health and Well-being Measure (ACHWM) and then met with a local mental health worker who determined their risk status. ACHWM Emotional Quadrant Scores (EQS) were compared between 3 groups of children: healthy peers (HP) who were not at risk, those with newly identified needs (NIN) who were at risk and not previously identified, and a typical treatment (TT) group who were at risk and already receiving support. RESULTS: We included 227 children (57.1% girls), and the mean age was 12.9 (standard deviation [SD] 2.9) years. The 134 children in the HP group had a mean EQS of 80.1 (SD 11.25), the 35 children in the NIN group had a mean EQS of 67.2 (SD 13.27) and the 58 children in the TT group had a mean EQS of 66.2 (SD 16.30). The HP group had significantly better EQS than the NIN and TT groups (p < 0.001). The EQS did not differ between the NIN and TT groups (p = 0.8). INTERPRETATION: The ACHWM screening process identified needs for support among 35 children, and the associated triage process connected them to local services; the similarity of EQS in the NIN and TT groups highlights the value of community screening to optimize access to services. Future research will examine the impact of this process over the subsequent year in these groups.

Culturally Safe Practices in the Co-creation of Medical Education Curriculum with Indigenous Animators: Outcomes From an Indigenous Learning Circle.

OBJECTIVES: To explore the experiences of Indigenous patient actors who co-created and enacted Indigenous patient scenarios in collaboration with medical school faculty. We critically examine the structures and systems in a medical school that mediate cultural safety for Indigenous patient actors. The Truth and Reconciliation Commission of Canada has called on medical schools and healthcare institutions to help address the intergenerational harms inflicted on Indigenous people by the Indian residential school (IRS) system. Institutions are striving to incorporate cultural competency, conflict resolution, human rights, and anti-racism education into their curricula. However, the structural inequities within undergraduate, postgraduate, and continuing medical education practices must be identified and challenged to ensure that medical education is authentic and culturally safe for those involved in the development and delivery of the Indigenous health curriculum. To explore potential structural inequities in the co-creation process of simulated cultural communication scenarios (SCCS), the Indigenous animators at Debajehmujig Storytellers and collaborating faculty and professional staff at the Northern Ontario School of Medicine University (NOSM U) examined cultural safety in their curriculum design and delivery process. METHODS: We utilized the qualitative Indigenous research methodology of the Learning Circle to deconstruct the co-creation process and to explore the experience of cultural safety from the Indigenous animators' perspective throughout the curriculum design and delivery process. RESULTS: A framework for culturally safe co-creation practices with Indigenous people, rooted within Indigenous teachings of the Medicine Wheel, emerged from the qualitative data. CONCLUSIONS: This framework has the potential to guide the practice of culturally safe co-creation of Indigenous patient simulations in medical education and healthcare workplace learning. While the Medicine Wheel teachings are held by specific Indigenous nations, we anticipate that the results and recommendations of this study will apply to Indigenous co-creators and academic medical educators internationally.

Teaching Culturally Safe Care in Simulated Cultural Communication Scenarios During the COVID-19 Pandemic: Virtual Visits with Indigenous Animators.

Clinical learning activities involving Indigenous patient actors that specifically address the development of culturally safe care skills among medical students are important in order to improve health care for Indigenous people. In 2020, the COVID-19 pandemic led to strict physical distancing regulations and regional lockdowns that made the in-person delivery of Simulated Cultural Communication Scenarios (SCCS) with Indigenous patient actors impossible due to the disproportionate risk that public health emergencies pose for Indigenous communities. As the pandemic continued in 2021, we co-created a Virtual Visit approach to SCCS for the education of culturally safe care to pre-clerkship medical students. We report on student and tutor evaluation of these virtual sessions and contextualize our findings with our previous results delivering In-Person SCCSs. We found that Virtual Visit SCCS were highly effective in providing authentic exposure to and feedback from Indigenous patients. However, students rated their learning outcomes with Virtual Visit lower than the In-person approach to SCCS. We recommend formal training on interacting with patients in virtual care scenarios prior to Virtual Visit SCCS. We also found that exposure to SCCS with Indigenous animators has the potential to conjure up a diverse spectrum of sometimes unresolved negative feelings related to colonialism among students and tutors including discomfort, embarrassment, and anxiety. Our findings underscore the importance of resolving these sentiments within the safe environment of a classroom. To prepare Indigenous as well as non-Indigenous students and tutors adequately, it is important to acknowledge and critically deconstruct the embodiment of colonialism and Indigenous-settler relations when teaching physicians, as well as future physicians, preparedness for culturally safe care of Indigenous peoples.

Improving the response of primary care providers to rural First Nation women who experience intimate partner violence: a qualitative study.

BACKGROUND: Some legacies of colonialism are that Indigenous women living in Canada experience higher rates of intimate partner violence (IPV) and that violence is often more severe relative to non-Indigenous women. This results in avoidable physical, psychological, emotional, financial, sexual and spiritual harm in the lives of Indigenous women, families, and communities. Trusted primary care providers are well positioned to provide brief interventions and referrals to treatment and services, but little is known about the providers' preparedness to support Indigenous women. Information on what enables or prevents providers to respond to Indigenous patients who experience IPV is needed in order to ensure this potential lifeline for support is realized. METHODS: The purpose of this community-based participatory study was to elucidate the barriers and facilitators to care for rural Indigenous women who experience IPV from the perspectives of primary care providers and to recommend strategies to improve their preparedness. Using a Grounded Theory approach, we conducted qualitative research with 31 providers to discuss their experiences with patients affected by IPV. RESULTS: The results showed providers often feel a degree of unpreparedness to deal with IPV in a clinical setting. Underlying the feelings of unpreparedness were: Recognition of patients' under disclosure of IPV due to stigma, shame and fear Lack of formal provider training on appropriate approaches to IPV Lack of referral network due to fragmented, scarce services for IPV Lack of understanding of jurisdictional complexity of First Nations and non-First Nations specific services for IPV Uncertainty how to negotiate cultural safety around IPV Multiple-role relationship & confidentiality dilemmas characteristic of small communities Risk of jeopardizing patient-provider relationship CONCLUSIONS: Our recommendations to improve provider preparedness to address IPV include reducing the stigma of IPV; creating effective referral pathways; improving cultural safety within the referral network; developing services for perpetrators; engaging natural helpers in the community, and; developing policies, procedures and continuing education related to patients who experience IPV in the clinical and community setting. We suggest that increasing providers' comfort to respond to IPV for rural and Indigenous women will ultimately lead to improved safety and health outcomes.

Co-creating Simulated Cultural Communication Scenarios with Indigenous Animators: An Evaluation of Innovative Clinical Cultural Safety Curriculum.

BACKGROUND: Building on partnerships with Indigenous communities and with the support of the Northern Ontario School of Medicine, faculty created groundbreaking, authentic cultural immersion curriculum designed to foster culturally safe interpersonal skills and cultural understanding. However, structural barriers to the teaching of clinical communication skills for culturally safe care to Indigenous patients persisted. To address this challenge, faculty collaborated with Indigenous animators on the co-creation of a new teaching modality of Simulated Cultural Communication Scenarios. We evaluated student learning experience, the faculty teaching experience, the attainment of teaching goals, benefits, and areas for improvement for this approach. METHODS: We piloted 9 Simulated Cultural Communication Scenarios with 64 medical students and 17 tutors. We collected quantitative and qualitative data regarding their experiences and perceptions of the new curriculum. The quantitative data was statistically summarized, and the qualitative data was coded and thematically analyzed. RESULTS: The emergent themes indicate that co-created Simulated Cultural Communication Scenarios support the acquisition of culturally safe clinical skills because the modality fosters authentic, safe, context rich, and anti-oppressive patient dialogue with Indigenous animators. Recommendations for optimizing the sessions included ensuring tutors have a deep understanding of the significance of cultural safety in patient care. As the pedagogy is different from the familiar standardized clinical skills sessions, tutors and students benefit from education on the pedagogical approach. CONCLUSION: Simulated Cultural Communication Scenarios, co-created with cultural insiders and academic educators, represent an authentic education approach to teaching culturally safe clinical encounters. The findings contribute to our understanding of translating social accountability into the clinical setting.

Health profiles of First Nations children living on-reserve in Northern Ontario: a pooled analysis of survey data.

BACKGROUND: The Aboriginal Children's Health and Well-Being Measure (ACHWM) was developed to enable Aboriginal health leaders to gather information on the health of children at a local community level. This paper aims to describe the typical health profiles of First Nation children living on traditional territory as a reference to assist in the interpretation of ACHWM scores. METHODS: Three First Nations in Ontario, Canada, gathered health data from children using the ACHWM administered on Android tablets between 2013 and 2015. The survey data were previously analyzed to inform local health planning. These survey data were pooled to describe the distribution of ACHWM summary and quadrant scores from a larger sample and inform interpretation of ACHWM scores. RESULTS: ACHWM data from 196 participants (aged 7.6 to 21.7 yr) across 3 communities were included in the pooled sample. ACHWM summary scores ranged from 39.8 to 98.7 with a mean of 74.1 (95% confidence interval [CI] 72.5-75.7) and a maximum of 100. Strengths were reported in the spiritual (mean 78.7, 95% CI 76.7-80.8), physical (mean 77.1, 95% CI 75.1-79.0) and emotional (mean 74.4, 95% CI 72.5-76.3) quadrants. The greatest opportunity for improvement was in the mental (cognition) quadrant (mean 61.6, 95% CI 56.9-63.4). INTERPRETATION: This paper presents initial estimates for child health scores based on self-report from a large sample of First Nations children living on reserve. These results establish benchmarks to aid interpretation of the ACHWM scores in these and other communities and contexts in the future.

Keeping kids safe: caregivers' perspectives on the determinants of physical activity in rural Indigenous communities.

INTRODUCTION: Physical activity is one way to ameliorate the disproportionately high obesity rates among Indigenous children yet little is known about the determinants of physical activity in First Nation communities. METHODS: A socioecological approach was used to explore the determinants that influence physical activity among Indigenous children in six First Nation communities in north-eastern Ontario, Canada. A thematic analysis of eight focus groups with 33 caregivers of Indigenous children was conducted. RESULTS: Caregivers reported that the present patterns of physical activity among children are different from previous generations, who were physically active through walking, outside play and physically demanding chores. Changes in lifestyles, influenced by the consequences of colonization, have resulted in reduced physical activity. Three themes emerged as present day impediments to physical activity: recreational technology, caregivers' safety concerns, and barriers to community activation. CONCLUSION: There is a dynamic interrelationship among the proximal, intermediate and distal determinants of children's physical activity with colonial policies continuing to have impacts in the participating First Nation communities. Community generated research and strategies are important ways to ameliorate physical inactivity and obesity among First Nation children.

Relevance of the Aboriginal Children's Health and Well-being Measure Beyond Wiikwemkoong.

INTRODUCTION: Aboriginal children in Canada experience significant disparities in health in comparison to their mainstream peers. As Aboriginal communities and agencies strive to improve health, it is important to measure the impact of new programs and services. Since many Aboriginal children live in rural and remote communities, it is important that communities have access to measurement tools that are relevant and feasible to implement in these contexts. The Aboriginal Children's Health and Well-being Measure (ACHWM) was developed to meet the need for a culturally relevant measure of health and wellbeing for Aboriginal children (ages 8-18 years) in Canada. It was developed within one First Nation community: the Wiikwemkoong Unceded Territory. The intention from inception was to ensure the feasibility and relevance of the ACHWM to other Aboriginal communities. The purpose of this article is to describe the relevance of the ACHWM beyond Wiikwemkoong. METHODS: This article presents the results of a community-based and collaborative research study that was jointly led by an academic researcher and a First Nations Health leader. The research began with the 58-question version of the ACHWM developed in Wiikwemkoong. The ACHWM was then submitted to a well-established process of community review in four new communities (in sequence): Weechi-it-te-win Family Services, M'Chigeeng First Nation, Whitefish River First Nation, and the Ottawa Inuit Children's Centre (OICC). The review process included an initial review by local experts, followed by a detailed review with children and caregivers through a detailed cognitive debriefing process. Each community/agency identified changes necessary to ensure appropriate fit in their community. The results from all communities were then aggregated and analysed to determine the similarities and differences. RESULTS: This research was conducted in 2014 and 2015 at four sites. Interviews with 23 children and 21 caregivers were completed. Key lessons were learned in all communities that enabled the team to improve the ACHWM in subtle but important ways. A total of 12 questions were revised, and four new questions were added during the process. This produced a 62-question version of the ACHWM, which was endorsed by all communities. CONCLUSIONS: The ACHWM has been improved through a detailed review process in four additional communities/agencies and resulted in a stable 62-question version of the survey. This process has demonstrated the relevance of the ACHWM to a variety of Aboriginal communities. This survey provides Aboriginal communities with a culturally appropriate tool to assess and track their children's health outcomes, enabling them to gather new evidence of child health needs and the effectiveness of programs in the future.

Innovations on a shoestring: a study of a collaborative community-based Aboriginal mental health service model in rural Canada.

BACKGROUND: Collaborative, culturally safe services that integrate clinical approaches with traditional Aboriginal healing have been hailed as promising approaches to ameliorate the high rates of mental health problems in Aboriginal communities in Canada. Overcoming significant financial and human resources barriers, a mental health team in northern Ontario is beginning to realize this ideal. We studied the strategies, strengths and challenges related to collaborative Aboriginal mental health care. METHODS: A participatory action research approach was employed to evaluate the Knaw Chi Ge Win services and their place in the broader mental health system. Qualitative methods were used as the primary source of data collection and included document review, ethnographic interviews with 15 providers and 23 clients; and 3 focus groups with community workers and managers. RESULTS: The Knaw Chi Ge Win model is an innovative, community-based Aboriginal mental health care model that has led to various improvements in care in a challenging rural, high needs environment. Formal opportunities to share information, shared protocols and ongoing education support this model of collaborative care. Positive outcomes associated with this model include improved quality of care, cultural safety, and integration of traditional Aboriginal healing with clinical approaches. Ongoing challenges include chronic lack of resources, health information and the still cursory understanding of Aboriginal healing and outcomes. CONCLUSIONS: This model can serve to inform collaborative care in other rural and Indigenous mental health systems. Further research into traditional Aboriginal approaches to mental health is needed to continue advances in collaborative practice in a clinical setting.