Current and ideal living arrangements and supports for Canadian adults with fetal alcohol spectrum disorder (FASD)-Part I: Perspectives from adults with FASD.

BACKGROUND: Adults with fetal alcohol spectrum disorder (FASD) can thrive with lifelong support in daily living activities. Previous research examining living support for adults with FASD has heavily relied on caregiver reports rather than lived experiences, which can undermine opportunities for self-determination. In this study, we examined the perspectives of adults with FASD to better understand: (1) the ways in which they are supported with daily life activities; and (2) their ideal future living arrangements and supports. METHODS: This article presents findings from the perspective of adults with FASD as part of a broader project involving both adults with FASD and the caregivers who support them. Interviews were conducted with four Canadian adults with FASD who live in housing with supportive services and seven adults with FASD who live at home with the support of caregivers. Framework analyses, a structured approach to analyzing qualitative data, were used to examine participants' perspectives. RESULTS: In addition to providing support for previous findings, participants provided novel information regarding: (1) their daily living supports; (2) positive and negative aspects of their arrangements; and (3) ideal living environments and supports. CONCLUSIONS: This study offers insight into participants' perspectives regarding their living support, which is critical to inform housing and aid in self-determination. Areas of support outlined by participants can be used to begin conversations regarding the support required in housing arrangements for adults with FASD.

Effective health and wellness systems for rural and remote Indigenous communities: a rapid review.

Background: The Canadian healthcare system bares a long legacy of colonisation and assimilation of Indigenous values and approaches to health and wellness. This system often perpetuates social and health inequities through systemic racism, underfunding, lack of culturally appropriate care and barriers to access care. Current funding legislation policies enacted across federal, provincialand territorial governments do not necessarily uphold Indigenous Peoples' rights to self-determination, health and wellness. We summarise literature on promising Indigenous health systems and practices that prioritise and/or improve rural Indigenous Peoples' health and wellness. Objective: The impetus for this review was to provide information on promising health systems, while Dehcho First Nations developed a health and wellness vision. Methods: Documents were gathered from indexed and non-indexed databases to obtain literature from peer-reviewed and non-peer reviewed sources. Two reviewers independently 1) screened titles, abstracts and full texts to ensure they met the inclusion criteria, 2) gathered relevant data from all included documents and 3) identified major themes and sub-themes. Reviewers then discussed and reached consensus on the themes. Results: Thematic analysis revealed six themes for effective health systems for rural and remote Indigenous communities: 1) access to primary care, 2) multi-directional knowledge exchange, 3) culturally appropriate care, 4) training and building community capacity, 5) integrated care and 6) health system funding. Conclusion: Effective health and wellness systems must support Indigenous ways of knowing and doing in healthcare models based on collaborative partnerships with community members, health providers and government agencies.

Sustainable health and wellness funding plans must be provided through federal, provincial, territorial and state partnerships.Indigenous core values, culture and knowledge must be integrated within mainstream health systems.Indigenous Rightsholders must inform all plans for altering or implementing Indigenous health systems.Non-Indigenous cultural safety and competency training can improve care.

Supporting pregnant and parenting women who use alcohol during pregnancy: A scoping review of trauma-informed approaches.

Alcohol is legalized and used for a variety of reasons, including socially or as self-medication for trauma in the absence of accessible and safe supports. Trauma-informed approaches can help address the root causes of alcohol use, as well as the stigma around women's alcohol use during pregnancy. However, it is unclear how these approaches are used in contexts where pregnant and/or parenting women access care. Our objective was to synthesize existing literature and identify promising trauma-informed approaches to working with pregnant and/or parenting women who use alcohol. A multidisciplinary team of scholars with complementary expertise worked collaboratively to conduct a rigorous scoping review. All screening, extraction, and analysis was independently conducted by at least two authors before any differences were discussed and resolved through team consensus. The Joanna Briggs Institute method was used to map existing evidence from peer-reviewed articles found in PubMed, CINAHL, PsycINFO, Social Work Abstracts, and Web of Science. Data were extracted to describe study demographics, articulate trauma-informed principles in practice, and gather practice recommendations. Thirty-six studies, mostly from the United States and Canada, were included for analysis. Studies reported on findings of trauma-informed practice in different models of care, including live-in treatment centers, case coordination/management, integrated and wraparound supports, and outreach-for pregnant women, mothers, or both. We report on how the following four principles of trauma-informed practices were applied and articulated in the included studies: (1) trauma awareness; (2) safety and trustworthiness; (3) choice, collaboration, and connection; and (4) strengths-based approach and skill building. This review advances and highlights the importance of understanding trauma and applying trauma-informed practice and principles to better support women who use alcohol to reduce the risk of alcohol-exposed pregnancies. Relationships and trust are central to trauma-informed care. Moreover, when applying trauma-informed practices with pregnant and parenting women who use alcohol, we must consider the unique stigma attached to alcohol use.

Barriers to perinatal mental health care experiences by midwives and obstetricians and their patients: A rapid review.

INTRODUCTION: While perinatal mental health concerns are common, little attention is paid to noticing or addressing these concerns. Midwives and obstetricians are uniquely positioned to universally screen their patients for mental health conditions during the perinatal period, and provide referrals for additional mental health supports if relevant. Previous studies on perinatal mental health care have focused primarily on midwifery care, excluding perinatal healthcare providers such as obstetricians. This rapid review aims to examine the barriers to accessing mental health care during the perinatal period as experienced by obstetricians, midwives, and their patients. METHODS: A rapid review of literature was conducted on barriers to perinatal mental health care as experienced by patients, midwives, and obstetricians. The search strategy included published literature from PubMed, CINAHL, PsycINFO, and Web of Science published between 2000 and 2020. All documents were screened by two researchers and disagreements were resolved through consensus with a third reviewer. After data from all included articles were extracted, thematic analysis was conducted, and findings were compared with related reviews that focused on mental health access for individuals who accessed midwifery care. RESULTS: Of the 539 references and documents that were screened, 31 articles met the inclusion criteria. In the extraction phase, country, study objective(s), study design, perspective(s), barriers, and the dimension(s) impacted along the pathway to accessing care were retrieved from the 31 included articles. After all barriers were classified using the Supply-Side Dimensions of Access, we developed a classification framework to further examine stigma at the societal, institutional, and individual levels. DISCUSSION: While midwives utilize a more holistic approach to care as compared with obstetricians, the barriers identified through this rapid review indicate that obstetricians and their patients face similar struggles to accessing and providing mental health care. Moreover, stigma plays a large role in the barriers experienced by patients, midwives, and obstetricians - at individual and institutional levels. CONCLUSION: Obstetricians encounter similar stigma-related barriers as midwives in detecting mental health concerns, as well as connecting clients to available mental health resources and supports. Therefore, to effectively eliminate barriers to accessing perinatal mental health care, a systemic change must be enacted throughout all three layers to address the deep-rooted stigma associated with accessing mental health care during the perinatal period.

Navigating Paths to Wellness: A Strengths-Based Photovoice Study Conducted with One First Nation in Southern Ontario, Canada.

Research on substance use challenges in First Nations communities is often deficit-focused and can reinforce paternalistic stereotypes that lead to further discrimination. In this article, we report on findings of a strengths-based Photovoice project done in collaboration with a First Nations' community in southern Ontario, Canada to better understand experiences with substance use challenges in the community. We analyzed interview data collected with seventeen individuals who have lived experience or are supporting a loved one with lived experience with a substance use challenge. Participants described sources of strength that characterized their path to wellness, including strong family and social connections, cultural practices, identity, spirituality, day-to-day activities, and helpful supports and services. Furthermore, participants made several suggestions for improving services, including the need for integrated and flexible systems of care and trustful client-provider relationships. At its core, nurturing wellness involved a transformative process involving social and/or cultural connections. The stories shared by participants demonstrate the unique and varied strengths drawn from by individuals dealing with a substance use challenge.

Anishinabek sources of strength: Learning from First Nations people who have experienced mental health and substance use challenges.

We report on the system of care and sources of strength and resilience for mental health among First Nations People experiencing the impacts of historical and contemporary colonization. Aamjiwnaang First Nation, a vibrant community of approximately 2400 members in southwestern Ontario, Canada, partnered in research to reveal sources of strength and resilience among community members with lived experiences (PWLE) with mental health and/or substance use challenges. A thematic content analysis was done using qualitative data collected as part of two complementary studies. In the first study called the "Five Views on a Journey" study, interviews with PWLE and family members of PWLE were conducted to better understand strengths and deficits in the system of care for mental health and substance use. In the second study entitled "A Strengths-Based Approach to Understanding How First Nations People Cope with Stress and Trauma," Photovoice was used to examine sources of strength and resilience among PWLE. Combined, these studies revealed that mental health supports and services that are trustworthy, open, and confidential are foundational to healing, helping PWLE find pathways to wellness by engendering feelings of hope, self-worth and pride. The integral roles of Anishinaabe culture and cultural identity as well as strong connections with family and community were key sources of strength and resilience. Our findings are discussed in the context of Aamjiwnaang's informal and formal systems of care, culture as wellness, inner strength, and the Truth and Reconciliation Commission of Canada's Calls to Action.

Impact on mental health and wellbeing in Indigenous communities due to land loss resulting from industrial resource development: protocol for a systematic review.

BACKGROUND: Indigenous Peoples are impacted by industrial resource development that takes place on, or near, their communities. Existing literature on impacts of industrial resource development on Indigenous Peoples primarily focus on physical health outcomes and rarely focus on the mental health impacts. To understand the full range of long-term and anticipated health impacts of industrial resource development on Indigenous communities, mental health impacts must be examined. It is well-established that there is a connection between the environment and Indigenous wellbeing, across interrelated dimensions of mental, physical, emotional, and spiritual health. METHODS: This paper identifies how the Community Advisory Team and a team of Indigenous and settler scholars will conduct the review. The literature search will use the OVID interface to search Medline, Embase, PsycINFO, and Global Health databases. Non-indexed peer-reviewed journals related to Indigenous health or research will be scanned. Books and book chapters will be identified in the Scopus and PsycINFO databases. The grey literature search will also include Google and be limited to reports published by government, academic, and non-profit organizations. Reference lists of key publications will be checked for additional relevant publications, including theses, dissertations, reports, and other articles not retrieved in the online searches. Additional sources may be recommended by team members. Included documents will focus on Indigenous Peoples in North America, South America, Australia, Aotearoa New Zealand, and Circumpolar regions, research that reports on mental health, and research that is based on land loss connected to dams, mines, agriculture, or petroleum development. Literature that meets the inclusion criteria will be screened at the title/abstract and full-text stages by two team members in Covidence. The included literature will be rated with a quality appraisal tool and information will be extracted by two team members; a consensus of information will be reached and be submitted for analysis. DISCUSSION: The synthesized evidence from this review is relevant for land use policy, health impact assessments, economic development, mental health service planning, and communities engaging in development projects. SYSTEMATIC REVIEW REGISTRATION: Registered in the International Prospective Register of Systematic Reviews (PROSPERO; Registration number CRD42021253720 ).

Knowledge translation approaches and practices in Indigenous health research: A systematic review.

Knowledge translation (KT) is a critical component of any applied health research. Indigenous Peoples' health research and KT largely continues to be taught, developed, designed, regulated, and conducted in ways that do not prioritize local Indigenous Peoples' ways of sharing knowledges. This review was governed and informed by Indigenous health scholars, Knowledge Guardians, and Elders. Our systematic review focused on answering, what are the promising and wise practices for KT in the Indigenous health research field? Fifty-one documents were included after screening published literature from any country and grey literature from what is now known as Canada. This included contacting 73 government agencies at the federal, territorial, and provincial levels that may have funded Indigenous health research. Only studies that: a) focused on Indigenous Peoples' health and wellness; b) documented knowledge sharing activities and rationale; c) evaluated the knowledge sharing processes or outcomes; and d) printed in English were included and appraised using the Well Living House quality appraisal tool. The analysis was completed using an iterative and narrative synthesis approach. Our systematic review protocol has been published elsewhere. We highlight and summarize the varied aims of Indigenous health research KT, types of KT methodologies and methods used, effectiveness of KT efforts, impacts of KT on Indigenous Peoples' health and wellness, as well as recommendations and lessons learned. Few authors reported using rigorous KT evaluation or disclosed their identity and relationship with the Indigenous communities involved in research (i.e. self-locate). The findings from this review accentuate, reiterate and reinforce that KT is inherent in Indigenous health research processes and content, as a form of knowing and doing. Indigenous health research must include inherent KT processes, if the research is by, for, and/or with Indigenous Peoples.

A scoping review of evaluated Indigenous community-based mental wellness initiatives.

INTRODUCTION: Many Indigenous peoples around the world are disproportionately affected by mental health challenges, due to intergenerational and collective trauma stemming from historical losses and ongoing colonialism. A growing body of literature suggests that mental wellness initiatives are more culturally safe and result in more successful and sustainable outcomes when they are developed by, for and with Indigenous communities using community-driven approaches that prioritize and privilege Indigenous leadership, knowledge systems, beliefs and practices. However, knowledge has not been synthesized on mental wellness initiatives and the extent of community engagement during the development, implementation, and evaluation stages of these initiatives. METHODS: The authors conducted a scoping review of studies on Indigenous community-based mental wellness initiatives to identify the (1) characteristics of these initiatives, (2) types of evaluation approaches (specific measures and assessment tools), (3) level of community engagement from inception to the evaluation stage of the initiative, and (4) lessons learned as identified by the authors. Published and grey literature were searched across several electronic databases. Inclusion criteria required that each study was published between January 2008 and June 2018, focused on Indigenous peoples and their communities in Canada, USA, Australia, and/or New Zealand, focused on a community-based mental wellness initiative, was meaningfully co-led or co-designed by the community, described the initiative and how it was evaluated, and was printed in English. RESULTS: The search yielded 1491 unique articles, and 22 of these articles met all of the inclusion criteria. All included studies took place in Canada, the USA, or Australia. Most mental wellness initiatives addressed general mental wellness, substance use, suicide prevention, and/or co-occurring conditions, and many were tailored for Indigenous youth. Culture-based initiatives were emphasized in most studies, with cultural adaptation and relevance prioritized in all initiatives. Approaches to evaluation ranged from process evaluations to outcome evaluations. Most studies used a mixed methods approach and a wide range of assessment tools, including questionnaires and indicators of community capacity building. Many evaluations used a shared leadership model between community leaders and researchers and had combinations of community members, families, Elders, Knowledge Keepers, and leaders involved in the development, implementation, and evaluation of the mental wellness initiative. Common challenges in conducting evaluation research included limitations of funding structures and the burden on community staff and leaders during the project. CONCLUSION: Overall, across all studies, culture stood out as a major theme for community-based mental wellness initiatives among rural and remote Indigenous communities, with cultural teachings, cultural activities, appropriate use of culture, land-based programming and knowledge sharing integrated into community programming. However, culture and Indigenous leadership throughout were lacking in many of the research studies. Thus, as more Indigenous communities and leaders govern and guide the development of evidence-based mental wellness programming, culture as a form of healing needs to be incorporated into the development of the program, and culture should be a core competency in any evaluation research.

Fostering implementation of knowledge into health practice: study protocol for the validation and redevelopment of the Knowledge Uptake and Utilization Tool.

BACKGROUND: Measurement of what knowledge is taken-up and how that information is used to inform practice and policies can provide an understanding about the effectiveness of knowledge uptake and utilization processes. In 2007, the Knowledge Uptake and Utilization Tool (KUUT) was developed to evaluate the implementation of knowledge into practice. The KUUT has been used by numerous large health organizations despite limited validity evidence and a narrow understanding about how the tool is used in practice and interpreted by users. As such, the overall purpose of this protocol is to redevelop the KUUT and gather validity evidence to examine and support its use in various health-related organizations. This protocol paper outlines a validation and redevelopment procedure for the KUUT using the unitary view of validity. METHODS: The protocol outlined in this article proceeds through four phases, starting with redeveloping the tool, then evaluating validity evidence based on: test content, response processes and internal structure. The initial phase gathers information to redevelop the tool, and evaluates item content and response format. The second phase evaluates response process validity evidence by examining how a variety of users interact with the tool. In the third phase, the tool will be pilot tested with knowledge users and, in the final phase, psychometric properties of the tool will be examined and a final scoring structure will be determined. A knowledge translation plan described herein outlines where the final tool will be housed and how the information about the tool will be disseminated. DISCUSSION: This protocol outlines a procedure to gather different sources of validity evidence for the KUUT. By addressing limitations in the original KUUT, such as complexities with scoring, a redeveloped KUUT supporting validity evidence will enhance the ability of health-related organizations to effectively use this tool for its intended purpose.

The past, present, and future of fetal alcohol spectrum disorder work in Newfoundland and Labrador: A landscape paper for change.

OBJECTIVES: In this paper, we provide an overview of best practices in FASD prevention, diagnostic, and interventions and supports. In Canada, people diagnosed with Fetal Alcohol Spectrum Disorder (FASD) represent a fraction people living with FASD. While social stigma may deter people from seeking an FASD diagnosis, other deterrents include the lack of screening and diagnostic referrals, cost of travelling to a clinic, and lack of clarity of how a diagnosis may improve supports and services. Preventing FASD and improving lifelong outcomes for people living with FASD requires a coordinated approach between prevention, diagnostic, intervention, and support efforts. METHODS: Using the example of Newfoundland and Labrador, a province where 60% of the population lives in rural communities and benefits from being involved in national initiatives and partnerships, we discuss efforts underway in other Canadian provinces to address FASD. RESULTS: We make three recommendations that begin to address FASD-specific needs in both rural and urban regions: a) a provincial FASD consultant position, b) an explicit partnership between provincial government and fasdNL, and c) increased access to FASD diagnostic teams. CONCLUSION: While the recommendations are both modest and essential first steps, we also suggest that collaborations and resource-sharing in FASD prevention and supports are more about doing things differently, rather than doing more.

Effective knowledge translation approaches and practices in Indigenous health research: a systematic review protocol.

BACKGROUND: Effective knowledge translation (KT) is critical to implementing program and policy changes that require shared understandings of knowledge systems, assumptions, and practices. Within mainstream research institutions and funding agencies, systemic and insidious inequities, privileges, and power relationships inhibit Indigenous peoples' control, input, and benefits over research. This systematic review will examine literature on KT initiatives in Indigenous health research to help identify wise and promising Indigenous KT practices and language in Canada and abroad. METHODS: Indexed databases including Aboriginal Health Abstract Database, Bibliography of Native North Americans, CINAHL, Circumpolar Health Bibliographic Database, Dissertation Abstracts, First Nations Periodical Index, Medline, National Indigenous Studies Portal, ProQuest Conference Papers Index, PsycInfo, Social Services Abstracts, Social Work Abstracts, and Web of Science will be searched. A comprehensive list of non-indexed and grey literature sources will also be searched. For inclusion, documents must be published in English; linked to Indigenous health and wellbeing; focused on Indigenous people; document KT goals, activities, and rationale; and include an evaluation of their KT strategy. Identified quantitative, qualitative, and mixed methods' studies that meet the inclusion criteria will then be appraised using a quality appraisal tool for research with Indigenous people. Studies that score 6 or higher on the quality appraisal tool will be included for analysis. DISCUSSION: This unique systematic review involves robust Indigenous community engagement strategies throughout the life of the project, starting with the development of the review protocol. The review is being guided by senior Indigenous researchers who will purposefully include literature sources characterized by Indigenous authorship, community engagement, and representation; screen and appraise sources that meet Indigenous health research principles; and discuss the project with the Indigenous Elders to further explore the hazards, wisdom, and processes of sharing knowledge in research contexts. The overall aim of this review is to provide the evidence and basis for recommendations on wise practices for KT terminology and research that improves Indigenous health and wellbeing and/or access to services, programs, or policies that will lead to improved health and wellbeing. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016049787 .

Reconciling community-based Indigenous research and academic practices: Knowing principles is not always enough.

Historically, Indigenous health research in Canada has failed to engage Indigenous peoples and communities as primary stakeholders of research evidence. Increasingly, research ethics and methodologies are being positioned as tools for Indigenous self-determination. In response, mainstream institutions have developed new ethical principles for research involving Indigenous people. While these transformations are necessary steps towards re-orienting research practices, they are not prescriptive. In this paper, we make visible three dilemmas from a case study in which Indigenous health research frameworks provided limited guidance or were unclear about how to balance community priorities with Indigenous research principles. We also discuss the strategies used to resolve each of these dilemmas. We draw examples from a project that examined the lived experiences of children and youth living with FASD and their caregivers. This project was conducted in collaboration with Sheshatshiu Innu First Nation, an Indigenous community in Labrador, Canada. In doing so, we argue that knowing the key guiding principles in Indigenous health research is not always enough, and that the 'real-world' context of practices and relationships can lead to conflicts that are not easily resolved with adherence to these principles.