Wisdom2Action: Mobilizing youths' lived-experience knowledge to inform mental health services
Lisa Lachance, Eugenia Canas
Many young people under the age of 25 in Canada struggle with mental health issues. Overall, 75% of ongoing mental health issues develop during adolescence, with 10-20% of youth affected by some kind of mental illness, while suicide is the second leading cause of death among 15–24 year olds. As our current healthcare system transforms to address youth mental health, national calls focus on timely care, increased evaluation of existing models, and the meaningful inclusion of youth and caregivers to inform the design of appropriate services.
The right of young people under the age of 18 to participate in decisions that affect them is enshrined in the UN Convention on the Rights of the Child. Considered alongside youth engagement past the age of 18, evidence supports the inclusion of youth in service- and policy-development as a way to create more effective programs and positive outcomes for youth. Emerging engagement models in youth mental health — such as the ACCESS Open Minds Network, the Foundry in British Columbia, and YouthCan through CAMH in Ontario — describe engagement with young people, providing guidance for projects that offer different levels of responsibility and empowerment for adults and youth. However, a recent review of patient involvement in healthcare underlined how little we know about the impact of including patients, and particularly youth, in shaping how organizations envision and deliver care.
Mobilizing Youths’ Knowledge
The term Knowledge Mobilization (KMb) is a largely Canadian term defined by the Social Sciences and Humanities Research Council as “the reciprocal and complementary flow and uptake of research knowledge between researchers, knowledge brokers and knowledge users—both within and beyond academia — in such a way that may benefit users and create positive impacts within Canada and/or internationally”. Youth engagement in KMb is an emergent practice, built on the participatory-research belief that youth can be active agents of change, rather than passive recipients of services, and on a genuine respect for young people’s capacities.
Effective efforts to mobilize the knowledge and lived experiences that young people hold include the recognition that youths’ knowledge lands in a contested space — where policymakers, professionals, researchers and even other users of the system may employ different conceptions of mental health, mental illness and its determinants, and approaches to treatment, management and recovery. Public health and biomedical information, and their attendant classification and diagnostic systems, have traditionally shaped mental healthcare. The recognition that, for services to work for youth, it is crucial to incorporate youths’ perspectives in the design of services shifts the stakes of this type of KMb. Consequently, we propose the mobilization of youths’ lived experience as a nuanced and social process within a public health context, and as an issue of health equity.
The Wisdom2Action Model
Wisdom2Action (W2A), a Canada-based KMb network, was founded in 2011 to focus on improving services provided to youth by increasing the uptake of evidence and evaluation in the youth serving sector. W2A has had a commitment to youth engagement as an important component of improving programs and services; since the creation of the W2A Youth Advisory Committee (YAC) in June 2013, young people have been involved in almost every W2A project. Project structures range from adult-initiated to youth-initiated.
One of W2A’s earliest projects was the development of a knowledge synthesis report co-led by researchers and young people, titled Working with Children and Youth in Challenging Contexts to Promote Youth Engagement. Other knowledge synthesis reports produced at the same time positioned young people as co-leads, and all reports were the subject of youth workshops before being finalized. In April 2013, W2A held its first network-wide event, a KMb simulation in which many young people participated. At the time, one youth representative sat on the Network’s Governing Board (at present, two youth do so).
Despite all of this early activity, W2A did not have a YAC during its early stages, due in part to concerns about maintaining such a structure for KMb projects, and the scarcity of precedents for such councils. After much discussion and deliberation with youth and adults, W2A members were invited to nominate youth involved in their organizations or who already had advisory experience, and the W2A YAC was born.
To date, YAC members have shared that working in KMb allows for the opportunity to achieve change at a sector-wide level, as opposed to a service-by-service approach that promotes promising practices such as youth engagement. Their involvement in W2A has led them to involvement in other national and international opportunities in youth mental health. One of the most visible contributions of W2A’s youth engagement approach has been through its community knowledge-sharing events, which invite all sector actors – including health and social science researchers, service providers, educators, public health professionals, and government officials – to consider together how best to support young people on a specific issue, such as sexual violence, or in a specific community. The vast majority of participants have reported an increased awareness of how youth engagement could contribute to policy and program development in their own organizations after their experiences at W2A events.
Engagement with Youth with Lived Experience of Mental Health Challenges
Supporting engagement of any kind, including youth engagement, requires resources in terms of policies, processes and finances. For a national organization like W2A, it is important to fund in-person meetings as well as support ongoing online communication that more regularly engages members of the youth committee across the country. W2A has provided staff support to the YAC to facilitate meetings and project activities, as well as ongoing mentorship. The issue of financial compensation in engagement is important to consider. Unlike adult members, youth committee representatives are often not salaried, and this may be a disincentive for youth involvement as well as an issue of equity. In addition, youth living with mental health illnesses may need to take breaks and time for self-care during the course of a project. Planning for this in project timelines and taking a team approach has been a crucial element of W2A processes with its YAC, enabling youth to take turns “tapping out” to take care of their mental health.
In keeping with calls for better articulation of the outcomes of youth engagement in other areas, we see a critical need for more evaluation of youth engagement in KMb. This is very much part of the W2A future. As W2A embarks on a participatory evaluation of its youth-engagement process, the organization and its youth committee will self-reflect on pathways, facilitators and hindrances to mobilizing youth knowledge into practice and service contexts.