Introduction
The stigma toward mental illness includes a variety of harmful stereotypical attitudes and behaviors enacted against people who have been labeled as mentally ill [
1]. Common stigmatizing beliefs include the notion that mental illness signals personal deficits, weakness, difference, and a lack of self-control, and that people with mental illness cannot recover and are dangerous and violent [
2]. Stigma intersects with culture and is found throughout all levels of society [
3]—in the general public, within families and social circles, in the media and social media, among healthcare professionals, and among affected individuals themselves [
4].
Stigma can be understood at three intersecting levels: structural, social, and self-stigma [
5]. Structural stigma refers to the policies and practices of institutions that systematically restrict the rights and opportunities for people living with mental health disorders. Social stigma refers to the process whereby social groups endorse stereotypes about people with a stigmatized condition and act against them. Self-stigma occurs when individuals with mental health disorders internalize societal attitudes and discriminatory practices.
In 2018, some 10% of Canadian youth aged 12–24 years considered their mental health to be no better than “fair” or “poor” [
6]. This proportion more than tripled in 2020, in the midst of the COVID-19 pandemic [
7]. Youth are a critically important population in terms of mental health promotion, prevention, and treatment from a developmental perspective. About half of all mental health disorders first arise by about mid-adolescence [
8]. Suicidal ideation and attempts are particularly high among youth [
9]. The negative impacts of mental health challenges on developmental trajectories make adolescence an optimal time to intervene, both for full threshold mental disorders and subthreshold mental health challenges. There is also a need for greater investment in mental health promotion and prevention efforts [
10]. Early intervention approaches, in particular, can connect youth with services before a full-threshold disorder develops. Although much work remains to be done in terms of developing effective, evidence-based early interventions for at-risk youth [
11], such interventions have the potential to prevent medium- and long-term deterioration.
Despite the potential for intervening early, youth are highly impacted by stigma, and stigma can in turn constitute a major barrier to service seeking [
12,
13]. In a systematic review, perceived stigma was found to be one of the main reasons youth choose not to seek mental health services [
14]. Service seeking is fostered by factors such as parental support and social support, positive past service experiences, and the youth’s motivation to develop coping skills and address negative impacts of mental health challenges [
13,
14]. A variety of mental health promotion and service design strategies have been recommended to foster service seeking among youth with mental health challenges, such as increasing health literacy [
14], developing youth-friendly service settings that address a wide range of challenges [
15,
16], and reducing stigma [
17].
A range of stigma reduction approaches have also been examined [
18]. For instance, intergroup contact theory proposes that direct contact with individuals impacted by stigma is key to reducing prejudice [
19]. Although social contact has become a key ingredient of anti-stigma interventions, for providers, professional contact may not have the same stigma reduction effects [
20]. Other approaches, including internet-based interventions [
21], arts-based interventions [
22], mass-media approaches [
23], and peer support [
24] also have potential. Among youth, classroom-based contact approaches have been used with some success [
25]. If such interventions can reduce stigma, they may increase the willingness of youth to seek services when needed. However, the effect sizes of anti-stigma interventions are consistently small and stigma remains a considerable societal problem [
18].
Researchers have been continually calling for more research on youth mental health stigma and stigma-reduction interventions to better understand the phenomena in various populations and reduce its negative impacts [
26‐
28]. Since youth are embedded in families, schools, and societies, there are many potential sources of stigma and targets for stigma-reduction interventions. Identifying the mechanisms of how stigma influences decision-making may help guide those designing anti-stigma interventions on how to best break down stigma’s impact as a barrier to service seeking. The present study aims to understand how stigma influences service seeking decisions among youth with mental health challenges in Ontario, Canada.
Method
Design and setting
An experiential approach to qualitative inquiry was used to understand youth experiences and meanings [
29]. Virtual focus group interviews were conducted in Ontario, Canada to elicit a rich understanding of the phenomena. The research team consisted of mental health researchers from the health and social sciences, clinicians, and youth co-researchers connected to a mental health and substance use clinical research setting. The present manuscript followed the Consolidated Criteria for Reporting Qualitative Research checklist [
30].
Epistemological stance
The present study was underpinned by a pragmatic worldview. As youth engagement occurred at all stages of this study, pragmatism was well suited to guide the study given the orientation towards real world practice and social change [
31]. Pragmatism aligns with youth-oriented research as it is underpinned by democratic values, collaborative and action-oriented approaches, and social justice [
31].
Youth engagement
In accordance with the McCain Model of Youth Engagement [
32], youth team members with lived experience contributed to all aspects of the project. Many youth members of the Centre for Addiction and Mental Health (CAMH) Youth Engagement Initiative have consistently identified stigma as an important research topic to pursue, guiding the initial project idea. Over the course of the project, five youth supported the research process through various roles, including three youth who were highly engaged in the project (one youth research analyst, one youth engagement specialist, and one youth data analyst), as well as two youth consultants who contributed on an advisory basis. Youth contributions included discussing the development of the grant application, co-developing study and recruitment materials, recruiting and consenting participants, co-facilitating the focus groups, analyzing and interpreting the data, and writing the manuscript. The three youth who contributed substantially to the project are co-authors (NYS, MD, SB).
Participants
Participants included 22 youth with lived experience of mental health challenges. To be eligible, youth had to be aged 14–25 years, reside in Ontario, and self-describe as having experienced mental health challenges. Some participants had a pre-existing relationship with the research team as they had previously participated in research by the team and expressed interest in participating in future research.
Procedures
Participants were purposively selected to increase sample diversity and breadth of data. In an initial open recruitment call, we sent a study flyer through the team’s networks of youth engagement entities and youth-serving organizations. We then examined several sociodemographic factors (age, gender, ethnicity) in the initial sample to identify gaps in diversity; accordingly, we used selective recruitment based on demographic characteristics to invite participants from a database of previous study participants in Ontario who consented to be contacted about future research. Potential participants contacted a research staff member by phone, email, or text, as per the study flyer, to learn more about the study. They were then invited to a screening and informed consent process, using the institutionally approved teleconferencing platform. Informed consent was collected electronically via REDCap software [
33], after which participants provided demographic information on an unlinked REDCap survey. Participant numbers were assigned sequentially as participants were screened. Participants received a $50 honorarium. CAMH Research Ethics Board approval was obtained.
Data collection
The research team conducted 4 semi-structured virtual focus groups from August to December 2021. A virtual platform was chosen for pragmatic reasons, given pandemic-related restrictions during the data collection period. The focus group discussions were approximately 120 min long, included 4 to 7 participants, and were held sequentially as participants were consented into the study.
The interview guide was developed collaboratively with the research team, including youth co-researchers. The guide included questions about the impact that various types of stigma have on service seeking, with a focus on attitudes, language, acceptance, discrimination, knowledge, and self-stigma. For instance, the guide included questions such as “When you’re struggling with mental health challenges, how does stigma affect the way you see your challenges?”, “Once you’ve made the decision to seek services, does mental health stigma make it harder to get those services?”, and “Once you’ve actually gotten into services, does mental health stigma affect how much you get involved or invested in the treatment?” The intersection of gender and other diversity factors with stigma was directly embedded in the interview guide, for example, “Do you think gender influences stigma? How does it influence your experience of stigma? How does it affect the way people feel or show stigma?” and “What other aspects of a person’s identity influence stigma?”.
Focus groups were co-facilitated by two youth with lived experience, one in a research analyst position and one as a youth engagement specialist. At the start of each focus group, they led a discussion about participants’ perspectives on stigma to help participants come to a common understanding of the topic. Discussions were recorded and transcribed verbatim. As focus groups were conducted virtually, participants had the option of using the chat function. To ensure that the chat content stimulated discussion among participants and was captured in the transcripts, facilitators read the content of the chat aloud as it occurred. A trained support worker was available if any participants needed extra support; this service was not used for any of the focus group discussions.
Data analysis
Data were analyzed inductively using reflexive thematic analysis (TA) as outlined by Braun and Clarke [
34]. Reflexive TA was chosen as it is a flexible approach to identify patterns and themes across the data. Reflexive TA is a recursive process and includes the following 6 phases: (1) data familiarization; (2) systematic coding; (3) generating the initial themes; (4) developing and reviewing the themes; (5) refining and defining the themes; and (6) writing the results. Within reflexive TA, themes are developed from codes and conceptualized as patterns of shared meaning. The analytic process was inductive and grounded in the data.
The coding process was conducted on NVivo 12 by a single analyst with lived experience (NYS). This process was organic and involved prolonged engagement with the data [
35]. Throughout the analysis, ongoing meetings with NYS, LDH, MD, and SB were held to foster a rich nuanced interpretation of the data and enhance reflexivity [
35]. For instance, the analyst (NYS) and lead (LDH) brought the tentative themes back to the youth co-authors (MD, SB) with representative quotes; through this discussion, they refined the themes, confirmed their relevance, and gained new interpretive insights. To aid quality practice, the analyst kept a reflexive journal throughout the research process. The written reflections were used to enhance self-awareness and reflect on researcher positionality.
Discussion
This study examined how stigma influences service seeking among youth with mental health challenges in Ontario, Canada. We generated three themes related to how youth may experience stigma during service delivery and their vision for future services: point of entry into the system, being biomedicalized or trivialized, and paving the way for non-stigmatizing services. Although self-stigma was initially a barrier to accessing mental health services, participants described that they must undergo a process of labelling to receive services. That is, youth can only receive services if they are deemed ‘sick enough’ by providers, in what they saw as an oversimplified classification of their lived experiences. During the labelling process, they expressed that their mental health challenges became either biomedicalized or trivialized. This deterred them from future services as they anticipated future encounters would be similar. Finally, participants described priorities for reducing stigma.
Previous research shows that stigma delays access to mental health services [
28,
36,
37]. Consistent with existing literature on stigma among service-seeking youth [
36,
38,
39], many youth in the present study delayed seeking services due to negative stereotypes that they encounter in the media, limited mental health literacy, label avoidance, and fear of shifted self-image. Moreover, disclosure-related concerns can also delay access to services [
36]. In our study, disclosure concerns were raised by participants who felt that seeking services would shift their professional identity or jeopardize their career prospects. As most of the stigma research is carried out with adults [
40], further research is needed on youth identity and mental health stigma as identity and career development contexts may differ for youth.
In clinical settings, it has previously been reported that people seeking mental health services often feel patronized, dismissed, and humiliated by their providers [
41,
42]. Youth have reported that even providers minimize and belittle their mental health concerns, and that they are denied access to services if they are not considered sick enough [
43]. Therapeutic pessimism—when providers hold pessimistic views regarding the likelihood of recovery—is also a source of stigma in clinical settings [
42]. In the present study, participants referred to therapeutic pessimism as their challenges are considered ‘unfixable’ or they are quickly labeled as ‘treatment resistant’. Similar to our findings, Barney et al. [
44] found that negative beliefs regarding symptom severity can shift the blame to individuals when they do not recover fully and quickly. In short, individuals would come to stigmatize themselves for their mental illness if they did not recover quickly and doubly if clinicians labeled them ‘unfixable’. However, most stigma research focuses on initial access to care [
28]. Our findings highlight how clinical encounters that are experienced as stigmatizing also deter youth from accessing services at later points.
Stigma manifests across the spectrum of mental health challenges, negatively impacting life opportunities, quality of life, and self-esteem [
45]. For milder mental health challenges, illness invalidation and controllability stigma emerge [
45‐
47]. Illness invalidation stigma occurs when certain symptoms are viewed as trivial, while controllability stigma involves beliefs that individuals are responsible for resolving their symptoms on their own [
47]. For example, in a recent study [
48], youth reported invalidating experiences such as not feeling heard or seen by providers, being turned away from services, and non-recognition of the severity of their symptoms. Wrongful depathologization, such as when the severity of mental health problems is trivialized by providers, can increase stigma as it reinforces stereotypes that service users exaggerate their symptoms [
49].
Many of our findings align with a conceptual model by Henshaw et al. [
47] on treatment and illness stigma. Although the model is specific to depression, the components relate to the experiences of youth in our study. For instance, the model suggests that when people seek services soon after symptom onset, they are met with the stigma of being ‘not sick enough’ [
47]. If they seek services too late, they are faced with the stigma of being ‘too sick’. Given the established value of early intervention [
50], mitigating the stigma that prevents youth from accessing effective early interventions is a critical step to improving youth mental health.
Youth consider labels to be a double-edged sword. On the one hand, labels can facilitate help seeking for youth by enabling access to services, validating their experiences, and providing them with a greater understanding of their diagnosis [
37]. On the other hand, labels place youth in a distinct illness category that can further exacerbate stigma. Although much of the literature focuses on the consequences of labelling as it relates to stigma [
51], there are also consequences of withholding diagnostic labelling, for instance, placing youth in a ‘not sick enough’ category that disqualifies them from vital services. Moreover, oversimplified labels largely ignore the dimensionality aspect of mental illness. Lane [
51] discusses the implications of taking a categorical understanding of diagnosis—similar to ‘sick enough’ vs. ‘not sick enough’—in terms of reducing access to services and resources. This is also shown in finite prognoses and treatment options as mental health problems are seen as acute, with a distinct endpoint [
52]. Reflecting epistemic shifts in psychiatry, providers might consider moving away from categorical approach, towards a dimensional and transdiagnostic approach that cuts across traditional diagnostic boundaries and treatments [
53]. This is especially needed for youth, as the complexities with emerging and early illnesses are difficult to capture with traditional taxonomies [
54].
Early intervention models of care, such as transdiagnostic staging models that propose services for subthreshold symptoms [
54], hold the potential to prevent negative mental health impacts by addressing symptoms earlier. Our findings suggest that such models might have the added advantage of reducing stigma and encouraging service-seeking behaviors, as they open their doors to youth who might elsewhere be deemed as ‘not sick enough’. With a focus on early symptom reduction and resilience building, wellness-based models have the potential to bring mental health out of a medical model that excludes them based on symptomatic thresholds—which, according to youth, drives stigma and poses a barrier to care. From this perspective, addressing youth mental health at the societal level requires a wellness focus that prioritizes health equity, strengthens protective factors, and supports positive youth development [
55‐
57].
Despite increases in anti-stigma campaigns, stigmatizing attitudes held by providers remain [
58]. In light of our findings, reducing stigmatizing forms of care should be prioritized in systems change. There is a need for patient-oriented research and service development co-designed with youth [
16], in addition to anti-stigma training for providers early on in their careers [
38,
39,
59]. Moreover, as a few participants reported their care being influenced by stereotypes related to gender, race, and transphobia, anti-oppressive pedagogies should be integrated into training programs. Racialized groups often face ‘double stigma’, with mental health stigma being an additional burden to prejudice, maltreatment, and discrimination as it relates to racism [
60]. Future research should further explore youth experiences with ‘double stigma’, which remains largely unexplored for youth [
36,
37].
Strengths & limitations
This research demonstrates both strengths and limitations. A notable strength is the extent of youth engagement; engaging youth in all stages of the study enhanced the validity of the data and increased the relevance of the findings to the community. The remote nature of the focus groups enabled us to reach a more diverse sample and provided participants with an added means of contributing to the discussion, such as through the chat function; however, the virtual approach also excluded individuals without online access and prevented in-person group dynamics from occurring. Moreover, individual interviews may have evoked greater depth and clarity in the data compared to focus groups [
61]. It is also important to note that these findings provide a snapshot of perspectives on stigma at a unique time in the history of global public health, given that the COVID-19 pandemic has had considerable repercussions for both youth mental health and associated services [
62,
63]. Lastly, it is possible that the experiences reported are largely negative given that the interview guide did not include questions on positive experience with care. As suggested by MacDonald et al., future research on positive youth experiences with mental health services is needed to support best practices [
39], in addition to exploring service provider views to gain a more fulsome picture.
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