TransitionED: A protocol for Co-designing and implementing Canadian practice guidelines for transitions for youth with eating disorders.

OBJECTIVE: Limited guidelines inform the transition from paediatric to adult healthcare for youth and young adults (YYA) with eating disorders (EDs). This study will develop, implement, and evaluate Canadian Clinical Practice Guidelines for ED transition, including identifying the relevant measurement and evaluation tools for transition readiness and continuity of care. METHODS: This study consists of three phases. Phase 1 involves conducting a scoping review of the evidence on transition interventions, outcomes, and measurement tools for YYA with EDs, along with guideline development using the modified Delphi method. Phase 2 identifies the contextual/cultural factors relevant to guideline implementation and co-designing an implementation protocol with governance committees and research partners. Phase 3 involves the application and evaluation of the proposed guide lines using the implementation protocol, and assessing the acceptability and feasibility of a prototype transition intervention in two Canadian paediatric ED programs. CONCLUSIONS: Results will provide the knowledge needed to enhance the lives of YYA, improve the effectiveness of the ED care system, and support the scale of the transition guidelines across Canada. These guidelines will have international relevance by potentially informing the field on how to support young people with EDs transitioning in similar funding structures and systems of care.

Demographic and Clinical Presentations of Youth using Enhanced Mental Health Services in Six Indigenous Communities from the ACCESS Open Minds Network.

OBJECTIVE: In many Indigenous communities, youth mental health services are inadequate. Six Indigenous communities participating in the ACCESS Open Minds (AOM) network implemented strategies to transform their youth mental health services. This report documents the demographic and clinical presentations of youth accessing AOM services at these Indigenous sites. METHODS: Four First Nations and two Inuit communities contributed to this study. Youth presenting for mental health services responded to a customized sociodemographic questionnaire and presenting concerns checklist, and scales assessing distress, self-rated health and mental health, and suicidal thoughts and behaviors. RESULTS: Combined data from the First Nations sites indicated that youth across the range of 11-29 years accessed services. More girls/women than boys/men accessed services; 17% identified as LBGTQ+. Most (83%) youth indicated having access to at least one reliable adult and getting along well with the people living with them. Twenty-five percent of youth reported difficulty meeting basic expenses. Kessler (K10) distress scores indicated that half likely had a moderate mental health problem and a fourth had severe problems. Fifty-five percent of youth rated their mental health as fair or poor, while 50% reported suicidal thoughts in the last month. Anxiety, stress, depression and sleep issues were the most common presenting problems. Fifty-one percent of youth either accessed services themselves or were referred by family members. AOM was the first mental health service accessed that year for 68% of youth. CONCLUSIONS: This report is the first to present a demographic and clinical portrait of youth presenting at mental health services in multiple Indigenous settings in Canada. It illustrates the acceptability and feasibility of transforming youth mental health services using core principles tailored to meet communities' unique needs, resources, and cultures, and evaluating these using a common protocol. Data obtained can be valuable in evaluating services and guiding future service design. Trial registration name and number at Clinicaltrials.gov: ACCESS Open Minds/ACCESS Esprits ouverts, ISRCTN23349893.

A minimum evaluation protocol and stepped-wedge cluster randomized trial of ACCESS Open Minds, a large Canadian youth mental health services transformation project.

BACKGROUND: Many Canadian adolescents and young adults with mental health problems face delayed detection, long waiting lists, poorly accessible services, care of inconsistent quality and abrupt or absent inter-service transitions. To address these issues, ACCESS Open Minds, a multi-stakeholder network, is implementing and systematically evaluating a transformation of mental health services for youth aged 11 to 25 at 14 sites across Canada. The transformation plan has five key foci: early identification, rapid access, appropriate care, the elimination of age-based transitions between services, and the engagement of youth and families. METHODS: The ACCESS Open Minds Research Protocol has multiple components including a minimum evaluation protocol and a stepped-wedge cluster randomized trial, that are detailed in this paper. Additional components include qualitative methods and cost-effectiveness analyses. The services transformation is being evaluated at all sites via a minimum evaluation protocol. Six sites are participating in the stepped-wedge trial whereby the intervention (a service transformation along the key foci) was rolled out in three waves, each commencing six months apart. Two sites, one high-population and one low-population, were randomly assigned to each of the three waves, i.e., randomization was stratified by population size. Our primary hypotheses pertain to increased referral numbers, and reduced wait times to initial assessment and to the commencement of appropriate care. Secondary hypotheses pertain to simplified pathways to care; improved clinical, functional and subjective outcomes; and increased satisfaction among youth and families. Quantitative measures addressing these hypotheses are being used to determine the effectiveness of the intervention. DISCUSSION: Data from our overall research strategy will help test the effectiveness of the ACCESS Open Minds transformation, refine it further, and inform its scale-up. The process by which our research strategy was developed has implications for the practice of research itself in that it highlights the need to actively engage all stakeholder groups and address unique considerations in designing evaluations of complex healthcare interventions in multiple, diverse contexts. Our approach will generate both concrete evidence and nuanced insights, including about the challenges of conducting research in real-world settings. More such innovative approaches are needed to advance youth mental health services research. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov, ISRCTN23349893 (Retrospectively registered: 16/02/2017).

Two-eyed Seeing for youth wellness: Promoting positive outcomes with interwoven resilience resources.

Despite the challenges facing Indigenous youth and their communities due to historical and contemporary institutionalised racism in Canada, communities are drawing on the richness of their own histories to reassert their cultural heritage. Doing so supports mental health outcomes of young people in particular, as highlighted in a compelling body of research. The question facing many communities, however, is how they can facilitate such child and youth engagement in order to support related positive mental health outcomes. This article reports on findings from a Participatory Action Research (PAR) study conducted in a First Nations community in Unama'ki (Cape Breton), Atlantic Canada. The study, Spaces & Places, was a partnership between the community-based mental health service provider (Eskasoni Mental Health Services, EMHS), eight community youth (14-18 years old), and a team of academics. Situated within a resilience framework, the team explored the ways in which the community facilitated, or restricted, youth civic and cultural engagement. Foregrounded against a strong legacy of cultural reassertion within the community, findings highlight the core resilience-promoting resources that support positive youth development. Additionally, findings demonstrate how these resources provide meaningful support for youth because of the way in which they are intertwined with one another. Furthermore, cultural engagement is underpinned by the Two-eyed Seeing model, supporting youth to integrate their own culture with settler culture in ways that work best for them. Findings support community-based service structures, and underscore the importance of community resilience in the effective support of Indigenous children and youth.

Return on investment from service transformation for young people experiencing mental health problems: Approach to economic evaluations in ACCESS Open Minds (Esprits ouverts), a multi-site pan-Canadian youth mental health project.

Introduction: Mental health problems are common globally, and typically have their onset in adolescence and early adulthood-making youth (aged 11-25) an optimal target for prevention and early intervention efforts. While increasing numbers of youth mental health (YMH) initiatives are now underway, thus far few have been subject to economic evaluations. Here we describe an approach to determining the return on investment of YMH service transformation via the pan-Canadian ACCESS Open Minds (AOM) project, for which a key focus is on improving access to mental health care and reducing unmet need in community settings. Approach: As a complex intervention package, it is hoped that the AOM transformation will: (i) enable early intervention through accessible, community-based services; (ii) shift care away toward these primary/community settings and away from acute hospital and emergency services; and (iii) offset at least some of the increased costs of primary care/community-based mental health services with reductions in the volume of more resource-intensive acute, emergency, hospital or specialist services utilized. Co-designed with three diverse sites that represent different Canadian contexts, a return on investment analysis will (separately at each site) compare the costs generated by the intervention, including volumes and expenditures associated with the AOM service transformation and any contemporaneous changes in acute, emergency, hospital or service utilization (vs. historical or parallel comparators). Available data from health system partners are being mobilized to assess these hypotheses. Anticipated results: Across urban, semi-urban and Indigenous sites, the additional costs of the AOM transformation and its implementation in community settings are expected to be at least partially offset by a reduction in the need for acute, emergency, hospital or specialist care. Discussion: Complex interventions such as AOM aim to shift care "upstream": away from acute, emergency, hospital and specialist services and toward community-based programming which is more easily accessible, often more appropriate for early-stage presentations, and more resource-efficient. Carrying out economic evaluations of such interventions is challenging given the constraints of available data and health system organization. Nonetheless, such analyses can advance knowledge, strengthen stakeholder engagement, and further implementation of this public health priority.

Eskasoni First Nation's transformation of youth mental healthcare: Partnership between a Mi'kmaq community and the ACCESS Open Minds research project in implementing innovative practice and service evaluation.

AIM: ACCESS Open Minds (ACCESS OM) is a pan-Canadian project aimed at improving youth mental healthcare. This paper describes implementation of the ACCESS OM objectives for youth mental health service transformation within a pre-existing Fish Net Model of transformative youth mental healthcare service in the First Nation community of Eskasoni, on Canada's east coast. METHODS: We describe an adaptation of the ACCESS OM service transformation objectives through the complementary blending of Indigenous and Western methodologies. This concept of "Two-Eyed Seeing" is illustrated as central to engaging youth in the community and attending to their mental health needs and wellness. RESULTS: The ACCESS OM Eskasoni First Nation Youth Space acts as a central location for the site team and its activities, which expand into the rest of the community to facilitate early identification of youth in need. Rapid access to care is promoted via barrier-free availability through a central intake crisis and referral centre, and ease of contact through social media and other modalities. Youth are given the choice between standard Western mental health services, or Indigenous methods of improving well-being, or a combination of the two. CONCLUSIONS: The ACCESS OM framework has shown early results of being a positive addition to the Eskasoni community. Local leadership and community buy-in are identified as key factors to success. Further exploration, research, and evaluation of this transformation is ongoing. Successful implementation of this model in Eskasoni could act as a model for youth mental health programmes in other First Nations across Canada.

Canadian response to need for transformation of youth mental health services: ACCESS Open Minds (Esprits ouverts).

AIM: Youth mental health is of paramount significance to society globally. Given early onset of mental disorders and the inadequate access to appropriate services, a meaningful service transformation, based on globally recognized principles, is necessary. The aim of this paper is to describe a national Canadian project designed to achieve transformation of mental health services and to evaluate the impact of such transformation on individual and system related outcomes. METHOD: We describe a model for transformation of services for youth with mental health and substance abuse problems across 14 geographically, linguistically and culturally diverse sites, including large and small urban, rural, First Nations and Inuit communities as well as homeless youth and a post-secondary educational setting. The principles guiding service transformation and objectives are identical across all sites but the method to achieve them varies depending on prevailing resources, culture, geography and the population to be served and how each community can best utilize the extra resources for transformation. RESULTS: Each site is engaged in community mapping of services followed by training, active stakeholder engagement with youth and families, early case identification initiatives, providing rapid access (within 72 hours) to an assessment of the presenting problems, facilitating connection to an appropriate service within 30 days (if required) with no transition based on age within the 11 to 25 age group and a structured evaluation to track outcomes over the period of the study. CONCLUSIONS: Service transformation that is likely to achieve substantial change involves very detailed and carefully orchestrated processes guided by a set of values, principles, clear objectives, training and evaluation. The evidence gathered from this project can form the basis for scaling up youth mental health services in Canada across a variety of environments.

Creating a safe space for First Nations youth to share their pain.

INTRODUCTION: Indigenous children and youth may be quiet about the way they express their pain and hurt which is in contrast to how health professionals are trained to assess it. OBJECTIVES: The aim was to understand how youth from 4 First Nation communities express pain using narratives and art-based methods to inform culturally appropriate assessment and treatment. METHODS: This qualitative investigation used a community-based participatory action methodology to recruit 42 youth between 8 and 17 years of age to share their perspectives of pain using ethnographic techniques including a Talking Circle followed by a painting workshop. Physical pain perspectives were prominent in circle conversations, but emotional pain, overlapping with physical, mental, and spiritual pain perspectives, was more evident through paintings. Art themes include causes of pain and coping strategies, providing a view into the pain and hurt youth may experience. Youth were more comfortable expressing emotional and mental pain through their artwork, not sharing verbally in conversation. RESULTS: Circle sessions and artwork data were themed using the Indigenous Medicine Wheel. Content of the circle conversations centered on physical pain, whereas paintings depicted mainly emotional pain (eg, crying or loneliness; 74% n = 31) with some overlap with physical pain (eg, injuries; 54%), mental pain (eg, coping strategies; 31%), and spiritual pain (eg, cultural symbols; 30%). Common threads included hiding pain, resilience, tribal consciousness, persistent pain, and loneliness. CONCLUSION: Once a safe space was created for First Nation youth, they provided a complex, culturally based understanding of the pain and coping experience from both an individual and community perspective. These engaging, culturally sensitive research methods provide direction for health providers regarding the importance of creating a safe space for young people to share their perspectives.

Expression of pain among Mi'kmaq children in one Atlantic Canadian community: a qualitative study.

BACKGROUND: First Nation children have the highest rates of pain-related conditions among Canadian children, yet there is little research on how this population expresses its pain or how and whether the pain is successfully treated. The aim of this study was to understand how Mi'kmaq children express pain and how others interpret it. METHODS: We conducted a qualitative ethnographic study in a large Canadian Mi'kmaq community using interviews and conversation sessions. Participants included children and youth (n = 76), parents (n = 12) teachers (n = 7), elders (n = 6) and health care professionals (n = 13). RESULTS: Interpretive descriptive analysis was used and themes regarding pain expression, care seeking and pain management were identified. Pain expression included stoicism and hiding behaviour, and, when pain was discussed, it was via storytelling and descriptive language, such as similes. Participants reported feeling unheard, stereotyped and frustrated when they sought pain care. Frustration led to avoidance of seeking further care, perceptions of racism and repeat visits because of unsuccessful previous treatment. Participants voiced concerns about the utility of the numeric and faces pain scales to describe pain meaningfully. Positive encounters occurred when participants felt respected and heard. INTERPRETATION: Mi'kmaq children are stoic and often hide their pain. Community members feel frustrated and discriminated against when their pain is not identified, and conventional pain assessment tools may not be useful. If clinicians consider cultural context, build trust and allow for additional time to assess pain via storytelling or word descriptions as well as a family-centred approach, better pain care may occur.