Invited Commentary: ACCESS Open Minds Family and Carers Council

ACCESS Open Minds Family and Carers (AFC) Council represents families and carers, one of the key stakeholder groups participating in ACCESS Open Minds (ACCESS OM) (Malla et al., 2018). Families and carers are often part of a young person's life before that young person even reaches the first point of contact with mental health services, and are an important resource in the treatment and recovery of youth affected by mental health problems. Involving families and carers in their youth's care as early as possible increases the chance of better recovery. Within the context of the ACCESS OM core objectives AFC Council works to ensure that families and carers at all 14 ACCESS OM sites are able to participate fully in the transformation of youth mental health services as proposed by ACCESS OM. This site has engaged youth and their families and carers early on in the ACCESS OM initiative, as part of the community's integrated and holistic youth mental healthcare philosophy, as well as in the context of the ACCESS OM core objectives. The site has also contributed to maintaining family/carer representation on the national level in the AFC Council, adding much in terms of community knowledge and cultural tradition to the AFC Council. The site states that families are being engaged while maintaining confidentiality of youth. The AFC Council would like to learn more about how families are being engaged in site activities, including cultural activities. This site has embedded the overarching principles and core objectives of ACCESS OM from the outset of the project, including youth and family engagement. Youth and family/carer representatives are involved in their respective councils at the site and national levels. The AFC Council is fortunate to have had active family/carer representatives from this site, who have shared much information on family engagement tools, resources, expertise and insights with the AFC Council. The AFC Council continues to build capacity by learning more about the impact of the family navigator who offers peer support and connects families to services in the community which best suit the family/carer's desires and needs. The family navigator encourages families to participate in the ACCESS OM research in addition to co-facilitating various groups for families and carers (eg, : Family Connections, EPI family group, Parents for Children's Mental Health chapter). AFC Council would also like to learn more about the activities led by site team members to get families involved. This site is committed to transforming youth mental health and engaging families/carers within its own Inuit traditions and cultural context. The AFC Council has collaborated with site leads to support family engagement initiatives as the site builds capacity. The article describes lack of intergenerational connectivity and hesitation of youth to talk about mental health issues with their families as barriers to involving family members in care. Maintaining confidentiality in such a small community was also identified as a challenge. Despite these challenges, the site team continues their efforts to support the community by building capacity in community leaders, through their adaptation of a lay health worker model. This site has made great inroads in the transformation of youth mental healthcare. Site team members have engaged youth in creative and inclusive ways through their community mapping exercise, which has led to youth owning their participation in ACCESS OM NB. The article describes youth's impressions of ACCESS OM NB as a place they can trust, which is critical for youth seeking help. Despite challenges to establish the ACCESS OM NB Family-Caregivers Advisory Committee, this site has reached out to AFC Council members with the goal of helping families and carers to continue to build a provincial AFC advisory committee, with the possibility of family-carer representation on the AFC National Council. The site has also come to a mutual understanding on how youth define “family.” The fact that families were not mentioned by youth as an important support for mental healthcare does not necessarily mean that families are disengaged. Youth may say that family members are not involved, yet there may be someone who is supporting the young person in a healthy way. Youth may express a desire to meet clinicians alone as an expression of independence, which is an important transition from youth to adulthood. As youth embrace their independence, the system shifts away from parental/family/carer involvement towards parental/family/carer support when youth need it. Families and carers remain engaged but in a different way. It is vital that clinicians include families and carers in care while respecting youths' need for independence. This balance can be achieved by creating space for this vital conversation with youth about healthy support systems and their impact on well-being. These conversations must be ongoing and sustained throughout the care pathway through deep and continued conversations about healthy forms of familial support with the aim of including the significant adult in care planning. AFC Council is optimistic that the site team's mindset will strengthen future efforts to engage families. Early days in the ACCESS OM project saw this site work diligently to reorganize and update aspects of its healthcare model to adapt to the core objectives of the ACCESS OM model, including youth and family/carer engagement. AFC Council has been grateful for family/carer representation from this site on the national level. While the learning curve sometimes has been steep for all stakeholders, AFC Council is thrilled that the current family representative on the AFC Council is also this site's new Family Peer Support worker. The AFC Council would like to learn if educating families is leading to demonstrably better outcomes for both youth and their families. This site represents a university student population; therefore, the emphasis is on engaging youth in their own care, including welcoming who the student chooses to be part of their care team. The AFC Council acknowledges and respects the focus of this site's team to accommodate and ensure youth at this university site receive appropriate services. The AFC Council also recognizes the necessity of an ongoing commitment by the site to engage families and carers supporting students with mental health concerns. The AFC Council would like to learn more about the strategies that are employed to empower students to identify family and carers who are part of their support system, in the hopes that this is an ongoing invitation and conversation. Youth engagement at this site is especially challenging as the ACCESS OM site team works with homeless young people from both local and distant communities who are often in precarious situations. Yet this site has not neglected family engagement by reaching out to families and carers when possible. Site leads invite family and carer representatives to attend local events and to present on family engagement at site meetings, as well as sharing information and updates with various AFC Council members on the national level. Homelessness often includes disenfranchisement from family, yet the site acknowledges and works towards family-orientated discussion points. ACCESS OM RIPAJ recognizes that even though youth appear to be alone, and homeless, it remains critical and highly relevant, to have deep dialogue with youth about positive forms of family or carer support. This conversation must continue throughout the care pathway. This site's approach may provide insight to other communities who are struggling to engage family and carers. The site articles acknowledge commitment at all sites to family/carer engagement. AFC Council endeavours to document all activities intended to promote family/carer engagement vision, needs, barriers and successes, particularly when efforts are made to connect families with families. Such activities include family navigator and peer support positions as well as family advisors and family members participating in the hiring process of service providers and staff. AFC Council looks forward to continuing its work with the network on such initiatives. AFC Council members have stated that connecting with each other has validated individual experiences, which has equipped members with practical tools to cope, a caring community and hope. Data and insights, both quantitative and qualitative, need to be documented and disseminated with the aim of demonstrating the impact of family/carer engagement. AFC Council is eager to learn more about specific strategies, whether successful or not, that seek to involve families/carers in order to promote cross learnings. Ongoing communication about barriers and insights into family/carer engagement may promote the uptake of promising practices. ACCESS Open Minds is a Strategy for Patient-Oriented Research (SPOR) network funded by the Canadian Institutes of Health Research and the Graham Boeckh Foundation.

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