[Peer support for recovery in early intervention for psychosis: Issues surrounding its implementation in Quebec and the French-speaking world]. / La pair-aidance pour soutenir le rétablissement en intervention précoce pour la psychose : enjeux autour de son implantation au Québec et dans la francophonie.

Objectives To describe the different issues surrounding the integration of peer support workers (PSW) and family peer support workers (FPSW) into early intervention for psychosis services (EIS): their roles, the impacts of these interventions for patients, their families, and treatment teams, as well as the challenges and facilitators of this process. Method This article, co-authored with PSW and FPSW, presents a description and discussion of the experience of implementing peer support and family peer support in EIS in Québec, supported by a perspective of a review of the scientific and grey literature published in French or English in the last twenty years. Results Eight of the 36 scientific articles and two of the 14 grey literature publications selected were specific to early intervention for psychosis; the remainder were on mental health intervention. These publications put into context the experience described by clinicians, PSW and FPSW, and illustrated by clinical vignettes. Different modalities of peer support have demonstrated a positive impact on young people with early psychosis: it contributes to the improvement of self-esteem, quality of life, emotional well-being and can facilitate the rehabilitation process and reduce hospitalizations. Family peer support can reduce the stigma surrounding mental health problems, foster hope and a sense of belonging, increase knowledge of the illness and its treatment, and promote better coping strategies by family members. Nevertheless, many challenges have been identified during the integration of peer support and family peer support within clinical teams: planning and funding the implementation of services, defining their roles in EIS, training, clinical supervision, etc. These challenges need to be identified and addressed quickly in order to optimize care for youth and their families. Various strategies have been proposed for the successful implementation of peer support in EIS, which remains limited in Quebec and in the French-speaking world. It requires the participation and support of all stakeholders, including health professionals, managers and decision makers. Conclusion Peer support and family peer support emphasizes lived experience as expertise, recognizing the contribution of people with psychosis and their families as sources of support and models for recovery. This perspective fits well with the philosophy advocated by EIS. This promising intervention, which has been put forward by various national policies or guides, would benefit from being rapidly implemented on a larger scale in Quebec EIS and in the French-speaking world. This would make it possible to study the positive impacts described for service users and their families with more rigorous research designs and larger samples.

Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis.

BACKGROUND: With the sharp increase in the involvement of patients (including family and informal caregivers) as active participants, collaborators, advisors and decision-makers in health systems, a new role has emerged: the patient partner. The role of patient partner differs from other forms of patient engagement in its longitudinal and bidirectional nature. This systematic review describes extant work on how patient partners are conceptualized and engaged in health systems. In doing so, it furthers the understanding of the role and activities of patient partners, and best practices for future patient partnership activities. METHODS: A systematic review was conducted of peer-reviewed literature published in English or French that describes patient partner roles between 2000 and 2021 in any country or sector of the health system. We used a broad search strategy to capture descriptions of longitudinal patient engagement that may not have used words such as "partner" or "advisor". RESULTS: A total of 506 eligible papers were identified, representing patient partnership activities in mostly high-income countries. These studies overwhelmingly described patient partnership in health research. We identified clusters of literature about patient partnership in cancer and mental health. The literature is saturated with single-site descriptive studies of patient partnership on individual projects or initiatives. There is a lack of work synthesizing impacts, facilitating factors and outcomes of patient partnership in healthcare. CONCLUSIONS: There is not yet a consolidated understanding of the role, activities or impacts of patient partners. Advancement of the literature has been stymied by a lack of consistently used terminology. The literature is ready to move beyond single-site descriptions, and synthesis of existing pockets of high-quality theoretical work will be essential to this evolution.

Show me you care: A patient- and family-reported measure of care experiences in early psychosis services.

AIM: Despite their emphasis on engagement, there has been little research on patients' and families' experiences of care in early intervention services for psychosis. We sought to compare patients' and families' experiences of care in two similar early psychosis services in Montreal, Canada and Chennai, India. Because no patient- or family-reported experience measures had been used in a low- and middle-income context, we created a new measure, Show me you care. Here we present its development and psychometric properties. METHODS: Show me you care was created based on the literature and stakeholder inputs. Its patient and family versions contain the same nine items (rated on a 7-point scale) about various supportive behaviours of treatment providers towards patients and families. Patients (N = 293) and families (N = 237) completed the measure in French/English in Montreal and Tamil/English in Chennai. Test-retest reliability, internal consistency, convergent validity, and ease of use were evaluated. RESULTS: Test-retest reliability (intra-class correlation coefficients) ranged from excellent (0.95) to good (0.66) across the patient and family versions, in Montreal and Chennai, and in English, French, and Tamil. Internal consistency estimates (Cronbach's alphas) were excellent (≥0.87). The measure was reported to be easy to understand and complete. CONCLUSION: Show me you care fills a gap between principles and practice by making engagement and collaboration as central to measurement in early intervention as it is to its philosophy. Having been co-designed and developed in three languages and tested in a low-and-middle-income and a high-income context, our tool has the potential for global application.

[Sharing information and respecting confidentiality: Standards for improving the quality of mental health services]. / Partage d'informations et respect de la confidentialité : repères pour améliorer la qualité des services en santé mentale.

Objectives Collaboration between family caregivers and professionals plays a critical role in the recovery of the person living with a mental health disorder. However, collaborative practices between family caregivers and professionals are impeded by issues relating to confidentiality, particularly in connection with bidirectional information sharing between the parties involved. In doing so, these issues affect the quality of mental health services. Method A qualitative study was conducted with 19 family caregivers and 19 mental health professionals from 2 Quebec regions[2] in order to identify issues related to information sharing and confidentiality from their combined perspective. The Photovoice method was used and individuals semi-directed interviews were conducted with the 38 participants. Results Confidentiality and the refusal of the person living with a mental health disorder to consent to share information remains important and current obstacles in mental health practises. The organization of mental health services should ensure better integration of family caregivers into care teams so that they can contribute to the person's recovery and thus receive all the support and information they need to exercise their role. This study shows that family caregivers have different information needs in order to carry out their role and accompany the person living with a mental health disorder, including the need for general and non-confidential information to better support the person. While respecting the fundamental rights and autonomy of the person, who is free to consent or not to sharing information concerning him or her, professionals and family caregivers can still interact and create an alliance that promotes collaboration and recovery. Conclusion This article offers benchmarks to facilitate dialogue among people living with a mental health disorder, family caregivers and professionals, and to support their actions around information-sharing and respect for confidentiality in mental health practises. Ultimately, the intention here is to foster collaborative practices that will help improve the quality of mental health services.

The impact of COVID-19 on patient engagement in the health system: Results from a Pan-Canadian survey of patient, family and caregiver partners.

INTRODUCTION: The COVID-19 pandemic has had an impact on all aspects of the health system. Little is known about how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings within the health system, changed due to the substantial health system shifts catalysed by the pandemic. This paper reports on the results of a survey that included questions about this topic. METHODS: Canadian patient, family and caregiver partners were invited to participate in an online anonymous survey in the Fall of 2020. A virtual snowballing approach to recruitment was used. Survey invitations were shared on social media and emailed to health system and governmental organizations with the request that they share the survey with patient partners. This paper focuses on responses to two questions related to patient partner experiences during the COVID-19 pandemic. RESULTS: The COVID-19 questions were completed by 533 respondents. Over three quarters of respondents (77.9%, n = 415) indicated their patient engagement activities had been impacted by COVID-19. The majority (62.5%, n = 230) experienced at least a temporary or partial reduction in their patient engagement activities. Some respondents did see increases in their patient engagement activities (11.4%, n = 42). Many respondents provided insights into their experience with virtual platforms for engagement (n = 194), most expressed negative or mixed experiences with this shift. CONCLUSIONS: This study provides a snapshot of Canadian patient, family and caregiver partners' perspectives on the impact of COVID-19 on their engagement activities. Understanding how engagement unfolded during a crisis is critical for our future planning if patient engagement is to be fully integrated into the health system. Identifying how patient partners were engaged and not engaged during this time period, as well as the benefits and challenges of virtual engagement opportunities, offers instructive lessons for sustaining patient engagement, including the supports needed to engage with a more diverse set of patient, family and caregiver partners. PATIENT CONTRIBUTION: Patient partners were important members of the Canadian Patient Partner Study research team. They were engaged from the outset, participating in all stages of the research project. Additional patient partners were engaged to develop and pilot test the survey, and all survey respondents were patient, family or caregiver partners. The manuscript is coauthored by two patient partners.

Understanding patient partnership in health systems: lessons from the Canadian patient partner survey.

OBJECTIVES: To examine the sociodemographic characteristics, activities, motivations, experiences, skills and challenges of patient partners working across multiple health system settings in Canada. DESIGN: Online cross-sectional survey of self-identified patient partners. SETTING: Patient partners in multiple jurisdictions and health system organisations. PARTICIPANTS: 603 patient partners who had drawn on their experiences with the health system as a patient, family member or informal caregiver to try to improve it in some way, through their involvement in the activities of a group, organisation or government. RESULTS: Survey respondents predominantly identified as female (76.6%), white (84%) and university educated (70.2%) but were a heterogeneous group in the scope (activities and organisations), intensity (number of hours) and longevity (number of years) of their role. Primary motivations for becoming a patient partner were the desire to improve the health system based on either a negative (36.2%) or positive (23.3%) experience. Respondents reported feeling enthusiastic (83.6%), valued (76.9%) and needed (63.3%) always or most of the time; just under half felt they had always or often been adequately compensated in their role. Knowledge of the health system and the organisation they partner with are key skills needed. Two-thirds faced barriers in their role with over half identifying power imbalances. Less than half were able to see how their input was reflected in decisions or changes always or most of the time, and 40.3% had thought about quitting. CONCLUSIONS: This survey is the first of its kind to examine at a population level, the characteristics, experiences and dynamics of a large sample of self-identified patient partners. Patient partners in this sample are a sociodemographically homogenous group, yet heterogeneous in the scope, intensity and longevity of roles. Our findings provide key insights at a critical time, to inform the future of patient partnership in health systems.

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol.

BACKGROUND: Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. OBJECTIVE: This project aims to build a national adaptable framework for the evaluation of PPE in research, by: 1. Building consensus on common evaluation criteria and indicators for PPE in research; 2. Defining recommendations to implement and adapt the framework to specific populations. METHODS: Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. DISCUSSION: The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

[Family Approaches in Early Intervention: Benchmarks to Guide Intervention and Support Families in First Episode Psychosis Programs (FEPP)]. / Les approches familiales en intervention précoce : repères pour guider les interventions et soutenir les familles dans les programmes d'intervention pour premiers épisodes psychotiques (PPEP).

There is now broad consensus on the usefulness of family approaches in early intervention programs. The evolution of knowledge about early psychosis and the development of family interventions have greatly influenced the perception of families in the recovery process. Objectives This article proposes a state of knowledge of family intervention practices by looking at family involvement in early intervention. Knowledge from the family journey constitutes the historical basis of the article, while more recent knowledge about psychotic disorders and family intervention form the basis of the article's content. The objectives are to: 1) document the specific impacts and needs of families during a first episode of psychosis (FEP); 2) review the main approaches in family intervention; 3) guide the application of family interventions in FEP programs and 4) raise issues related to family involvement in early intervention. Method Historical knowledge on the development of family intervention approaches in mental health was documented from the work of pioneers in the field of family intervention, while the state of current practices has been the subject of a literature review (intervention models and approaches, effectiveness of interventions, issues of intervention and family involvement, etc.). Results from recent studies conducted in Quebec and elsewhere provide an overview of intervention methods and the contribution of families in early intervention teams. Issues related to the establishment of collaborative practices, information sharing and respect for confidentiality in mental health are addressed. Results Knowledge from the literature review and recent research is highlighted in relation to the First Episode Psychosis Intervention Programs Framework (Cadre PPEP, 2018) and the Mental Health Action Plan measures (PASM 2015-2020), as well as to international best practice guidelines for early intervention. They identify what has been achieved as well as ways to move forward in order to continue developing family intervention practices in Quebec. Conclusion Recognition of the essential role of families and their involvement in early intervention presents challenges. While family interventions have demonstrated their effectiveness, both for the person with the disorder and for their family, actions must be taken to support the implementation of these practices and ensure their sustainability in early intervention teams.

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).

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.