Abstract
While globally advances have been made to recognize children as social actors in their own right, for psychiatrized young people their experiences of distress are often seen as a limitation and thus used as a justification for denying their meaningful participation in matters of concern to their lives. However, what would it mean if ‘mental illness’ was not seen as a ‘limitation’, but rather as an ‘epistemological position’ from which the social world is experienced, understood and acted upon? What would it mean if our theories about ‘distress’ and ‘helping’ were premised on the subjugated knowledges of psychiatrized children and youth? The consumer/survivor-led research movement has made significant gains in answering these questions for the adult, but not necessarily for the child and youth mental health field. The purpose of this article is to critically examine the significance of psychiatrized young people setting and executing their own research and, ultimately, practice agendas. Presented are the outcomes of an evaluation of a participatory action research project examining the stigma of mental illness conducted with seven psychiatrized youth, 14 to 17 years old. The outcomes suggest our roles as practitioners and researchers need to shift from being ‘agents’ working on behalf of to ‘allies’ working in solidarity with young people to change the social conditions of their marginalization. The article concludes with the limits of consumer/survivor-led research for addressing adultism and, instead, ends with a call for decolonizing children’s mental health.
Keywords
Introducing the issue
Young people’s marginalization through psychiatrization
While globally advances have been made to recognize children as social and cultural actors in their own right, for psychiatrized young people their experiences of distress are often seen as a limitation and thus used as a justification for denying their meaningful participation in matters of concern to their lives. As a social group psychiatrized children and youth experience marginalization and discrimination related to both their subordinate status as ‘children/youth’ and their status of ‘having a mental health issue’ (Hinshaw, 2005; LeFrançois, 2008; LeFrançois and Coppock, 2014; Liegghio, 2016). As terms, ‘psychiatrization’ and ‘psychiatrized’ are used to acknowledge that ‘mental illness’ does not solely refer to personal dimensions of a person – their bio/psycho/social expressions of distress and/or particular psychologies – but also to the political dimensions of what it means to be conceived as ‘mentally ill’ in a society that devalues ‘mental illness’. Instead, ‘mental illness’ and ‘having a mental illness’ are understood as social constructs that come into existence when contact is made with psychiatry and ‘psy’ disciplines (including psychology and social work). It is through psy-practices, such as assessment, diagnosis, and, ultimately, treatment that certain expressions of distress and certain psychologies are deemed ‘abnormal’, ‘pathological’ or ‘disordered’ (Kecmanovic, 1983; Rose, 1998).
The primary effect is the construction of the person as ‘different’ in a society that devalues and dehumanizes as ‘abnormal’ persons deemed to be ‘mentally ill’ (Bell, 1993). In this way, differences are attached as features of a person’s identity and become the social justification for intervening in the lives of those adults and children deemed to have a mental illness. For instance, in research conducted with youth receiving inpatient psychiatric care, LeFrançois (2008) reported that based on a query about a suspected mental disturbance listed in the young person’s chart, youth were provided with mental health treatments that included medication, isolation and restraints. In some situations, it was later found that the query misrepresented the young person, their needs and issues (LeFrançois and Diamond, 2014). Of particular concern was the way the young people who questioned their treatment (e.g. by asking the purpose of a medication) were constructed as ‘non-compliant’ by the professionals on the psychiatric unit. In turn, the non-compliance was taken as further evidence of mental disturbance, resulting in the use of coercive and punitive measures aimed at gaining the child’s conformity (LeFrançois, 2008). Once psychiatrized, mental illness is an identity position placed on the young person through the construction of undesirable behaviours – such as questioning, resistance and not-compliance – as further evidence of the mental disturbance.
However, what would it mean if ‘mental illness’ was not seen as a ‘limitation’, but rather as an ‘epistemological position’ from which the social world is experienced, understood and acted upon? What would it mean for mental health practitioners if our theories about ‘distress’ and ‘helping’ were premised on the subjugated knowledges of the young people we serve instead of our objectified and professionalized knowledges? The consumer/survivor-led research movement has made significant gains towards answering these questions for the adult system, but not necessarily for the children’s mental health system. 1 An important argument made is that as long as research agendas are set by the professionals within the psy-disciplines, then the knowledge produced is flawed because it ultimately reflects the epistemologies of those disciplines, rather than the subjugated epistemologies of persons whose identities and lives are psychiatrized. Advocated for is a shift of power away from objectified forms of knowledge to the lived knowledges situated in the everyday realities of the people whose lives are rendered under study (Costa et al., 2012; Landry, 2017; Sweeney et al., 2009). Such a shift has the potential to transform current pathologizing and stigmatizing practices to emancipatory practices – practices in which research and service programming are not just based on the opinions as tokenistic gestures, but rather are led by the knowledge and ways of knowing of the youth whose lives we are sanctioned to serve (McGarry, 2016). In adult mental health, this is an underlying principle of consumer-led or controlled research (Costa et al., 2012; Landry, 2017; Sweeney et al., 2009).
The purpose of this article is to critically examine the significance of psychiatrized youth setting and executing their own research agendas. First, the premises of consumer-led research and participatory action research (PAR) are discussed. Second, the outcomes of an evaluation of a participatory-action research project conducted with seven (n = 7) psychiatrized youth, 14 to 17 years old, examining the stigma of mental illness are presented. In particular, the evaluation examined participation in the PAR as an anti-stigmatizing approach for working with psychiatrized youth. Finally, the implications of the outcomes are discussed for the ways in which adult roles need to shift from being ‘agents’ working on behalf of to being ‘allies’ working in solidarity with young people. The limits of consumer-led research are considered, in particular, the limits for addressing adultism, and instead, concludes with a call for decolonizing children’s mental health.
Consumer-led research: an epistemological challenge from adult mental health
Within the adult mental health field, ‘consumer/survivor-led’ or ‘consumer/survivor-controlled’ research emerged from the consumer/survivor movement of the 1980s. The key premises are the empowerment, emancipation and anti-discrimination of persons constructed as having a mental illness and/or involved as users or consumers of mental health services (Sweeney et al., 2009). In particular, the focus was on, not only bringing into mental health research the opinions of people with lived experience, but on critiquing, challenging, and ultimately, changing the very ways in which knowledge was understood and produced (Sweeney et al., 2009). The premise being that research – as a knowledge production process – is a political and social process that can reproduce the marginalization and discrimination of persons constructed as having a ‘mental illness’. From this premise emerged the call for a fundamental shift in the positioning of ‘lived’ or ‘situated’ knowledge – that is knowledge and ways of knowing that comes from living the problem, issue or phenomena under study – as credible, valid and legitimate (Beresford, 2009). Thus, the move towards research partnerships with consumers/survivors and the use of participatory approaches.
PAR as an example of user-led research
Mobilizing psychiatrized youth to study the stigma of mental illness
As a research approach, PAR aligns well with the premises of consumer/survivor-led or controlled research. PAR asserts that research should be democratic and inclusive and that the ‘best’ solutions to social issues rest on the situated knowledge of the people whose lives are directly affected by those issues (Kemmis and McTaggart, 2005). Partnering with a child and youth mental health agency, 2 the outcomes reported here were part of a larger mixed-methods study (refer to Liegghio, 2013). The agency has a long-standing history of providing a continuum of community-based mental health services to children/youth, and their caregivers and families. Located in a large urban area near Toronto, Ontario, Canada, the agency housed the PAR.
The PAR component of the study consisted of convening a youth research team to work alongside myself as the (adult) principal investigator to explore the stigma of mental illness in child and youth mental health. 3 An underlying belief adopted throughout the project was that if unjust social and personal conditions were to change, the youth need to be included through ‘meaningful participation’ in the research. Meaningful participation means having the power to influence decisions and decision-making processes (Liegghio et al., 2010). It implies the researcher relinquish a certain amount of power over the research process to the youth/participants so that decisions are shared at every stage (Healy, 2001; Kidd and Kral, 2005). Ethics approval was obtained through both the Research Ethics Board at Wilfrid Laurier University and the agency partner.
Recruitment, research activities, and the PAR evaluation
Recruitment
Members for the youth PAR team were recruited through the agency partner for the project. Recruitment consisted of connecting with frontline managers and mental health therapists (social workers, family support workers, psychologist and psychiatrist) and asking that a letter introducing the project be passed along to potential youth and their caregivers. The letter advised interested youth/caregivers to contact me directly and once contacted, brief information about the study was provided and appropriate youth and their legal guardians were invited to participate in an in-person information meeting. In this meeting, I met independently with the potential youth-participant and their caregivers and the full details of the study were reviewed (i.e. purpose and risks and benefits). Informed consent was obtained from both the youth and his or her caregivers.
Purposive sampling was used to identify the youth-participants. The criteria for inclusion were that they had to be between 14 and 18 years old, nearing the end of their mental health treatment or had used mental health services within the previous 2 years. Since participation in the PAR was time- and labour-intensive and to ensure the youth had the appropriate support, consent from the caregivers of youth under 18 years old was considered necessary (which excluded those who did not have caregiver consent). Table 1 summarizes the demographic information about the youth participants.
Youth demographic information.
Research activities
The purpose of the PAR group was to explore the ways young people diagnosed with a mental health issue experienced their mental health and also how they were viewed and treated by others within their families, communities and society in general. The group purpose was reinforced through the group norms, which translated into practice the principles of PAR. The main principles included supporting opportunities for meaningful participation with power shared between the adult-lead and the youth for deciding at each stage of the research process, both the content and process of the research and that as much as possible, the process itself was going to be an ideological and physical site where stigma was to be resisted and combatted. To build and support the capacity and agency of the youth so that they could conduct research, they were provided with both informal and formal training on research designs including quantitative and qualitative methods.
Group norms were established throughout the process and were based on what each of the members valued as most important. The norms were negotiated by consensus and resulted in seven group norms that guided our practices. The norms covered the purpose of the group and meetings; the roles of the youth and adult-lead; the ways knowledge from different social positions were valued; confidentiality; how conflicts or differences of opinions were to be addressed; how decisions would be made democratically through a voting system; and how participation would be supported when interrupted by personal circumstances, such as a mental health crisis or psychiatric hospitalization. The group norms were important for creating a space where safety was fostered allowing for trust, and, ultimately, establishing the project as a space inclusive of difference, as well as providing a framework for resolving conflicts between members, including myself, as the researcher (Wickman et al., 2009). Overall, the structure of the PAR process provided a scaffold for the research team to plan, organize and execute our research initiatives (Kemmis and McTaggart, 2005).
From March to November 2011, the team participated in the following research activities: (1) formal and informal training on research designs and methods; (2) assisting in the development of a national youth survey on stigma, a content analysis of the ways youth with mental health issues were portrayed in everyday media and a photo voice project whereby the team answered their own research question about what was ‘normal’ mental health for children and youth; and (3) an evaluation of their participation in the PAR as a model for resisting and combatting the stigma of mental illness. For recognition and appreciation of their time for participation, the youth were provided with an honorarium of $30.00 (cash or gift certificate) per month for the duration of the study, as well as a $15.00 transportation allowance per trip to cover the costs of attending the meetings/activities.
PAR evaluation
The evaluation of the PAR framework occurred throughout and consisted of informal and formal discussions with the youth and their caregivers. An evaluation of the PAR is important because of recent critiques about the ways in which co-design and participatory approaches have become ‘fashion’ as an attractive method of youth engagement, but has done little to address the domination of adult perspectives and theories over children’s lives (LeFrançois, 2013; McGarry, 2016; Mauthner and Doucet, 2003; Petr, 2004). This article adds to work that calls for hearing directly from youth about their experiences of participation in the intricate processes of research, as epistemological processes (McGarry, 2016). The formal evaluation consisted of semi-structured, one-to-one interviews with five youth and three caregivers at the conclusion of the project. The focus of the interviews was on their experiences of participating in the collaboration. For participation in the final evaluation interviews, the youth and caregivers received a $30.00 and a $15.00 transportation allowance.
The outcomes presented here are of the analysis of the transcripts of the formal final semi-structured interviews with the five youth and three caregivers (n = 8 transcripts in total). Data analysis was based on a critical narrative discourse analysis, which consists of three interrelated components: (1) an analysis of the ‘content’ of the experiences, (2) an analysis of the ‘form’ of the narrative or how the narrative is told or constructed and (3) an analysis of the social ‘context’ or functions of the narrative in relation to its broader social and cultural contexts (Elliot, 2005). The advantage of using a narrative approach for analysing the data is that it opens up the possibilities of examining the content and construction of the PAR experience, and the ways the PAR experience fits within the broader social context. The goodness or rigour of the data depended on the consideration of all possible meaning for concepts as they were identified and labelled throughout the research process. The strength of the PAR process is that the verification of interpretations occurred throughout the process as youth feedback, perspectives and interpretations were incorporated during knowledge construction with the young people who have firsthand experience of the issues under study (Whyte, 1989).
Outcomes of the PAR evaluation
In the final evaluation, all members of the collaboration – the youth, caregivers and agency representative – reported that participation in the PAR was an overwhelmingly positive experience. Emerging from the youth and caregiver interviews were three main interrelated categories of concepts describing and explaining what made participation positive. The three categories are as follows: (1) feeling valued and valuable, (2) meaningful participation relied on structure and material resources and (3) the relationships embody into experiences the principles of PAR. When discussing the findings and presenting excerpts, pseudonyms are used and identifying information altered or removed to protect the confidentiality of the participants.
Category one: feeling valued and valuable
Throughout the project and in the final evaluation interviews, the youth consistently reported the main reason the PAR process was a positive experience was because they felt their opinions and ideas were heard, respected and adopted by me and by the systems I represented the university, funder and community partner.
I can speak and people listen. And I’ve always tried to speak about these problems but I feel no one actually ever listens to a teenager with problems, they think I’m just trying to ‘cop-out’ or something, or just trying to justify myself, where here, I speak and people actually listen, yeah they listen, people actually listen and I have a voice here.
She [daughter] didn’t talk a lot but when she did, she felt like it mattered to the group, which countered the negative feedback she received in the past.
Being taken seriously had a de-pathologizing effect created by the experience that the youth, as a person – their knowledge and lived experiences – were valued and valuable.
Feeling valued and valuable as an anti-stigmatizing experience was reinforced by the youth feeling connected to a ‘bigger cause’, working to improve conditions not only for themselves but for others.
Every opinion counts so maybe if mine in combination with others, maybe it would help make a difference . . . The thing that I learned about myself in this project is that I can really, if I put my mind to it, help people a lot, since, with all the things I’ve been through and the knowledge that I have, I feel like I could really make a difference.
Definitely, participating in the project was so positive . . . she experienced herself in a different way . . . the whole thing itself, the participatory part, having a say, being part of a group – gave them all a voice and she would come home saying ‘we need to get these people knowing how we feel, to see how our feelings are affected and what it’s like to be this way’ . . . the best was that it came from them, driven by their thoughts and ideas.
Overall, working for a greater cause helped build positive relationships, a sense of self-respect and confidence, and a sense of responsibility and allyship with others (Flicker et al., 2008; Genat, 2009). Participation in the PAR allowed the youth to have experiences of the self as successful, reliable and competent, rather than as incompetent and discredited – where having a mental health issue was accepted, and not considered negative and a hindrance to who and what the person was, could be, and could do. As a second category of concepts to emerge was the ways agency and meaningful participation (as an anti-stigmatizing experience) relied on the structure and material resources available to the project, to support its activities and members.
Category two: meaning participation relied on structure and material resources
An unexpected outcome of the evaluation was the ways in which the structure and resources around the person, the group and the research process were as important as the ideology or principles of PAR. The structure and resources from week-to-week remained the same: 1 hour of worktime followed by 1 hour of social time including a meal; the same confidential meeting space provided by the agency; and an honoraria and transportation allowance.
The best thing for me was probably eating . . . ’Cause it’s like, you made it like we’d do a little bit of work and then we’ll go – the rest of the time was just easy-going, and that was just really easy ‘cause, like, I knew every time it was going to be the same.
[Commenting on why the collaboration worked] . . . taking it step-by-step with everybody instead of rushing through things and trying to hit certain deadlines for everything. This is the way we have to do it. You sort of, like did step-by-step so everybody in the group made sure that we were on the same page so someone’s not falling behind or someone’s not going to be too far ahead.
The structure and consistency provided predictability, which was especially important for youth who experienced anxiety as a feature of their mental health issue (as they knew what to expect). The structure – the group purpose, norms and activities – are the translation of the principles of PAR into practice. My leadership was not defined as making decisions for the group, but as facilitating and organizing discussions and content so the group could make decisions on their own behalf. This is particularly important because of the ways in which, as previously noted, in practice settings, such as psychiatric units, psychiatrized youth are systematically dismissed or excluded from decisions and decision-making processes because of stigma and age-based prejudices embedded within institutional processes (LeFrançois, 2008; LeFrançois and Diamond, 2014).
Early in the project, many of the youth stated a main reason for joining was because of the money received in the form of the honoraria. By the end, the youth stated that along with the money, they participated because they believed in the helping work of the group and felt good about themselves and the contributions they were making.
And there were things that, like, the side perks, like money and, you know community hours, 4 but, like, in reality that’s not what it’s about – it’s about helping people.
The funding received for the project not only allowed for the execution of the project, it was a powerful cultural symbol and message to the youth that they as persons, the group as a unit, and the research as a process were important – important to fund, while key emotional resources were having the support of parents who encouraged their children to participate; receiving training to build their research skills, confidence and local capacity; and feeling valued by the principal researcher. Along with the structure and resources, the relationships that defined the collaboration emerged as a third category of outcomes.
Category three: relationships translate into experiences the principles of PAR
From the feedback provided by the youth and their caregivers, my practice, 5 my relationships with the youth, and the relationships the youth had with one another were important elements of what made the experience of participating positive and anti-stigmatizing.
I feel like you were good at empathizing, not in a sense that, like, you have a ‘mental disability’ but just in the sense that you know how people look at people with disability and so on, and how we do and how we get looked at . . . you weren’t rude to us, like you’d give us a chance, to express how we felt, like, if we didn’t like something, you wouldn’t be like, ‘No, like that’s not gonna happen’. You’d give us a chance to explain why you wanted that or something, and you’d be fair.
I wish you were my mom instead ’cause like, you know what it’s like and you don’t take anything, like, personally. You’re just so easy-going and it doesn’t really matter what I say to you ‘cause it’s going to be okay . . . I think maybe that’s the way you were trained, but like it works. Like, the way you treat people . . . you treat them like they need their space and they should have their space . . . you treat them with a lot of respect.
What worked about your approach was that you did not pamper them, you did not treat them like they are sick . . . you acted like a normal person, true and genuine . . . you did not make him feel awkward, different, or stupid . . . you said things straight up and direct when they messed up.
In particular, the youth commented the positive elements were that I added opinions and gave feedback in ways that did not make the youth feel ‘dumb’ or incompetent; helped the youth learn; helped the youth feel positive or better about themselves; and made them feel genuinely liked as a whole person. Caregivers also commented that an important factor was that their children felt connected to me and in some cases did not want to disappoint me.
Many of the youth compared the collaboration and relationships with one another as being ‘family-like’ – a compelling metaphor of the significance the PAR.
People here are awesome. They’re very interactive. And it’s just like an overall good family – like a dysfunctional family . . . It’s like we’re always rambling and at times we are at each other’s throats and then we’re just covering each other’s back. We’re always starting by arguing by the end of the day we’re there helping each other, like, trying to do this or that. . . . We’re just there, every [meeting] and doing our interviews, working, like we’re just there, and they become the people you are close to.
The metaphor of the family signified having a place of belonging; feeling valued and valuable; being connected to other people; working towards collective goals; being treated with respect; and having a predictable process and people to depend on that were generally accepting of the mental health issues.
Conclusion
Implications for action
In many ways, the outcomes suggested that as an example of user-led research, PAR was effective in resisting and combatting the stigma of mental illness as a structural condition of children’s lives. The youth experienced knowledge as valued and valuable, while also developing a consciousness about the ways their personal experiences were bound to broader social conditions and processes. The youth felt connected to a ‘bigger cause’ and had a sense they could influence change, improving conditions for themselves and others. They described the research relationships as one of respect and as ‘family-like’. The family metaphor was a powerful symbol of belonging, connectedness and interdependence – having people they could depend on in a context where their mental health was generally accepted. In addition, the research structure, resources and relationships emerged as important to supporting agency, meaningful participation and inclusion, as well as resisting and combatting stigma. The main implication to emerge from this work is in the form of a lesson learned, and that is working with psychiatrized youth does not have to be organized by dominant psychiatric theories that position adults as experts over children’s lives.
The outcomes suggest our roles as adults need to shift away from being ‘agents’, as therapists or researchers trying to change the child and their experiences of distress to that of ‘allies’ working in solidarity with, not for, young people to change the social and cultural conditions of their marginalization, in this case, the stigma of mental illness. Such an approach moves away from a ‘therapy-driven’ to an ‘emancipatory’ practice in child and youth mental health. The PAR experience offers a critical understanding that ‘helping’ can have a dual focus – on both the person and on the structural conditions.
However, a major limitation of this work was that despite the focus on the stigma of mental illness as a form of marginalization, the PAR, as a consumer/survivor-led research approach, did not go far enough to name and then challenge the power differentials associated with childhood. Despite PAR being a positive experience, it was a one-off initiative and although the community partner saw the value, very little changed in the ways in which psychiatrized youth were brought into policy and service planning and delivery. In other words, little changed about how their knowledges were used and then incorporated into changing the systems that dominated their lives. Child and youth mental health continues to be dominated by adults and what adults believe is in the best interest of young people (Petr, 2004).
When I reflexively consider my power and role as the ‘researcher’, and in particular, as the ‘adult’, notwithstanding my commitment to share power, I was ultimately the person that decided the research focus, received the funding to support the initiative, and decided participation. As others have noted about PAR, it was effective in engaging youth, but despite my best efforts, the research as an epistemological process was dominated by adults (me and the adult institutions in which my work occurred) – by adult worldviews and standards of legitimate knowledge; and ultimately, by adult epistemologies (McGarry, 2016). In other words, the PAR did very little to tackle ‘adultism’ as a feature of child and youth mental health. ‘Adultism’ refers to the ways in which children and youth are subjugated by adults and adult-fitted systems (LeFrançois, 2013; Petr, 2004). It is the tendency to view, construct and treat young people – their lives, mental health, distress and well-being – through the worldviews, perspectives, values and beliefs of adults and not necessarily those of young people (LeFrançois, 2013; LeFrançois and Coppock, 2014). In adultist practice, children and youth and their lives are objects acted upon by adults (Petr, 2004), instead of agents and subjects uniquely positioned in childhood to inform and act in their own full right as social actors (LeFrançois, 2008). The effects of this are an unequal power balance and the discrimination occurring at both the individual and systemic levels (LeFrançois, 2013).
Ultimately, there continues to be a colonization in child and youth mental health research of young people’s knowledges, ways of being, and ways of knowing by adults’ knowledges, ways of being, and ways of knowing. There is a need for decolonizing child and youth mental health. More practice approaches and research initiatives are necessary that have children and youth leading with their knowledges and ways of being as full agents in their own right, rather than partial or immature citizens on their way to becoming full adults, at which time they are recognized with the capacity and rights to then make full claims over their lives. Decolonizing children’s mental health requires as much deeper analysis of power and children’s subjugation under and by adults as outcomes and features of adult–child relationships and systems. This is the task for moving towards fuller emancipatory practices and systems in child and youth mental health.
Footnotes
Funding
The author(s) received no financial support for the research, authorship and/or publication of this article.
