The Good,the Bad,and the Vision: Exploring the Mental Health Care Experiences of Transitional-Aged Youth Using the Photovoice Method

Abstract

Transitional-aged youth (TAY) between the ages of 16 and 24 experience higher rates of mental distress than any other age group. It has long been recognized that stability, consistency, and continuity in mental health care delivery are of paramount importance; however, the disjointed progression from paediatric to adult psychiatric services leaves many TAY vulnerable to deleterious health outcomes. In Spring 2019, eight TAY living with mental health challenges participated in a Photovoice study designed to: (1) illuminate their individual transition experiences; and, (2) support a collective vision for optimal mental health care at this nexus. Participants took photographs that reflected three weekly topics—the good, the bad, and the vision—and engaged in a series of three corresponding photo-elicitation focus group sessions. Twenty-four images with accompanying titles and captions were sorted into nine participant-selected themes. Findings contribute to an enhanced awareness of psychiatric service delivery gaps experienced by TAY, and advocate for seamless and supportive transitions that more effectively meet the mental health care needs of this population.

Keywords

photovoice participatory youth-led participatory action research youth engagement youth transitional-aged youth emerging adult transition mental health psychiatry nursing

Introduction

The transition from adolescence to adulthood brings with it a myriad of new challenges and potential stressors that may negatively influence psychosocial wellbeing (Baggio et al., 2017; Grob et al., 2020; World Health Organization, 2012). The process of physiological maturation––encompassing hormonal flux, neurocognitive development, and personality formation––when combined with role adjustments and external pressures, leave youth questioning their own identity and sense of belonging (Arnett, 2015; Mental Health Commission of Canada [MHCC], 2016; Sawyer et al., 2018). It should come as no surprise then, that transitional-aged youth (TAY) between the ages of 16 and 24 experience higher rates of mental distress than any other age group (Mental Health America, 2021; Pearson et al., 2013).

While biological transformations occurring during adolescent development significantly modify health trajectories, relational and sociopolitical considerations may play an even greater role in predicting mental health outcomes among youth (Baggio et al., 2017; Wood et al., 2017; Yin et al., 2016). It has long been recognized that stability, consistency, and continuity in care delivery are of paramount importance for individuals with mental illness (Lindgren et al., 2014; McGorry et al., 2013; Tobon et al., 2015); however, the disjointed progression from paediatric to adult psychiatric services leaves many TAY vulnerable to its deleterious sequelae (i.e., poor biopsychosocial health outcomes stemming from existing psychopathology), including social isolation, self-harm, substance use, and suicidal ideation (Gandhi et al., 2016; Signorini et al., 2018).

In Canada—like many other developed nations—the mental health sector is ill-equipped to meet the care demands of TAY, resulting in undue suffering (Martel & Fuchs, 2017). Indeed, this issue represents a global health problem, and is a rapidly growing area of clinical research internationally (Iorfino et al., 2019; Leeb et al., 2020; Lindgren et al., 2015; Signorini et al., 2018). Not only is the TAY population underserviced, but the limited treatment and intervention programs offered also seldom reflect the unique challenges of this cohort as they enter adulthood (Office of the Provincial Advocate for Children and Youth for Ontario, 2013; Shah & Boudos, 2012; Wagner et al., 2017). Furthermore, a lack of mental health funding is a pervasive issue that greatly restricts the accessibility and comprehensiveness of psychiatric supports (MHCC, 2014). Despite widespread acknowledgement of this problem by political leaders, healthcare providers, and the general public (Hovish et al., 2012; Singh et al., 2010; Wiens et al., 2020), youth remain under-supported by the very system intended to promote their wellbeing (Amartey et al., 2017; Broad et al., 2017).

Circumstances are dire for Canadian TAY, who fall to the bottom of the waiting list for adult psychiatric services on their 18th birthday—a gap that leads to treatment disengagement in 60% of cases (Canadian Mental Health Association of Ontario, 2017; CAMH, 2019; Davidson & Cappelli, 2011). Further contributing to this fragmented transition is the diffusion of responsibility for mental health policies and standards spread across government sectors, thereby resulting in poor communication and coordination of care (Kaufman & Pinzon, 2016). For TAY fortunate enough to have received appropriate paediatric mental health services during childhood, many are unlikely to be granted the same level and type of care post-transition, resulting in a loss of treatment protocol, trusted caregivers, and family involvement (Paul et al., 2018; Por et al., 2004; Schraeder et al., 2018). This is largely due to private insurance coverage limitations and ever-tightening exclusion criteria, as well as bureaucratic complexities that govern the availability of services across institutions (Moroz et al., 2020).

The period of transition between adolescence and adulthood, and its associated challenges, are anything but new (Arnett, 2015; Mandarino, 2014; Schulenberg & Schoon, 2012). Indeed, the American Academy of Child and Adolescent Psychiatry first identified TAY mental health care as a ‘new frontier’ nearly a decade ago, stating that: “new treatment paradigms may result in improved patient engagement … with better long-term outcomes” (Wilens & Rosenbaum, 2013, p. 889). However, research regarding the unique psychiatric care demands of this population have only recently gained traction among health researchers and practitioners alike (Broad et al., 2017; Cleverley et al., 2018b; Embrett et al., 2016; Hart & Maslow, 2018; Hawke et al., 2019; Nguyen et al., 2017). Furthermore, the limited qualitative interprofessional health literature available on this topic often lacks the critical stance necessary to fully capture the impact of existing sociopolitical and institutional inefficacies upon the lived experience of those transitioning to adulthood (Cleverley et al., 2016; Embrett et al., 2016). Finally, the voices of TAY are notably absent in this field of research, potentially leading to unfounded assumptions about service delivery gaps that have evolved through peripheral observation and interpretation, rather than collaborative discourse and thematic analysis driven by participant knowledge and insight (Clark et al., 2008).

Purpose

The purpose of this study was to: (1) illuminate the experiences of youth transitioning from paediatric to adult psychiatric services––considering the various intrapersonal, relational, and contextual nuances that influence this transition; and, (2) support a collective youth vision for optimal mental health care at this nexus.

Method

Design

This study was conducted using a youth-led participatory action research (YPAR) framework in order to engage study participants throughout the research process and promote a more equitable distribution of power within the researcher-participant relationship (Ozer, 2016). Stemming from the Participatory Action Research (PAR) methodology which favours collective wisdom and emancipatory change over post-positivist epistemological traditions (Fals-Borda & Rahman, 1991; Freire, 1982), YPAR is an innovative community-engaged research approach grounded in principles of social justice, in which young people participate in projects designed to inform programs and policies that are specifically tailored to their needs (Anyon et al., 2018). Regarded as experts on the phenomena of interest, TAY were actively involved during design, implementation, and analysis phases, as well as the conception of knowledge dissemination initiatives (Nykiforuk et al., 2011). By exposing institutional barriers to psychiatric service utilization during the transitional period, participants had the opportunity to serve as mental health advocates and change-agents.

Wang and Burris’ (1997) Photovoice method was employed to unearth the subjective realities of study participants (Evans-Agnew & Rosemberg, 2016). Photovoice is a visual and arts-based qualitative research method situated within a PAR framework, and the critical paradigm more broadly (Elias, 2017; Liebenberg, 2018). Traditionally used to generate public awareness and interest in issues pertaining to marginalized communities, Photovoice brings stifled and concealed experiences to the forefront of societal consciousness, in order to effect meaningful sociopolitical reform (Catalani & Minkler, 2010). Originally conceptualized as a health promotion tool by Wang and Burris (1997), Photovoice combines photography and experiential learning with critical reflection, discourse, and analysis. Such techniques promote participant empowerment, community ownership, and social justice by adhering to three overarching goals: (a) conferring autonomy upon participants through ongoing involvement and influence in research processes; (b) identifying, synthesizing, and translating knowledge regarding the values, strengths, and challenges faced by a particular vulnerable population; and, (c) reaching policymakers and political leaders through language and photographs that are both accessible and impactful (Wang & Burris, 1997). Correspondingly, this study applied such principles through topic-driven and self-paced individual photography assignments, followed by photo-elicitation focus group discussions that involved a combination of written reflection, photo sharing, story-telling, and collaborative thematic analysis through categorizing and captioning. Photovoice’s theoretical underpinnings closely aligned with the objectives of this study, making this progressive qualitative method ideally-suited to elucidate and advocate for the unique needs of TAY living with mental health challenges.

Sample and Setting

Using a purposive sampling strategy, this study targeted TAY between the ages of 18 and 24 with self-identified mental health challenges, who accessed mental health care during childhood and/or adolescence. This included both acute inpatient psychiatric supports, as well as outpatient ambulatory care, and may have been related to crisis intervention, assessment, treatment, or rehabilitation. A formal diagnosis based upon criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (American Psychiatric Association [APA], 2013) was not required for participation, as mental health status is fluid and may have necessitated intervention, irrespective of a formal diagnosis (Centers for Disease Control and Prevention, 2021). In order to capture the progression from paediatric to adult services, participants’ mental health challenges must have endured since turning 18—to the extent that they may have benefitted from professional psychiatric supports—as determined by each participant’s subjective self-assessment. This criterion was not only necessary to determine whether TAY continued to access such services upon entering adulthood, but also whether the support received adequately met their mental health care needs.

This research study took place in London, Canada—a mid-sized urban centre located in southern Ontario, with considerable ethnic diversity and socioeconomic variability. Considered a major healthcare hub within the province, London boasts a large number of acute care facilities, as well as community agencies. This city also has a high proportion of young people who fall within the TAY demographic, owing primarily to its two large post-secondary academic institutions. Given that London serves as a temporary place of residence for many students pursuing higher education, an assumption was made that eligible participants may have relocated from another region. While recruitment catered to TAY who were currently residing in the city of London or surrounding rural municipalities of Middlesex County, participants may have received mental health care anywhere within the province of Ontario. Since policies governing mental health in Canada are enacted largely at the provincial/territorial level and can therefore differ greatly across such jurisdictions, TAY who accessed psychiatric services outside of Ontario were excluded. Restricting wide-ranging psychiatric services to a defined geographic location provided consistency when exploring participants’ transition experiences, while also embracing slight variations in healthcare provision by institution and practitioner. Participants were recruited through local television and media interviews, public presentations at community events, as well as poster advertisements placed in youth “hubs” and shared with London’s mental health leaders.

Data Collection

Participants were enrolled in this study in the Spring of 2019, during which time they were invited to take part in three, weekly 90-min focus group sessions and complete a demographic questionnaire. In preparation for the first focus group session—and each session thereafter—participants were asked to take photographs that reflected their personal mental health care experiences throughout the transitional period, using their own digital camera, smart phone, or other electronic device. Listed sequentially, weekly topics included: (a) the good—positive experiences during the transition from paediatric to adult psychiatric services; (b) the bad—negative experiences during the transition from paediatric to adult psychiatric services; and, (c) the vision—a vision of optimal mental health care during the transition from paediatric to adult psychiatric services.

Participants were invited to identify one to two photographs, which they felt best reflected the weekly topic, to be printed for use at the upcoming focus group session. Each session was led by a Graduate Student Researcher and involved individual reflection and collaborative discussions about participants’ images, as well as sorting, titling, and captioning activities that aided in the discovery of overarching themes and patterns. At the beginning of each session, participants were given time to write freely about their selected photograph(s), and were asked to respond to the six questions outlined in the SHOWED method developed by Wallerstein and Bernstein (1988): (a) What do we S ee?; (b) What is really H appening?; (c) How does this relate to O ur lives?; (d) W hy does this issue exist?; (e) How can we become more E mpowered by understanding this issue?; and, (f) What can we D o to address this issue? TAY were then invited to share their unique insights with the group in the form of a ‘gallery walk,’ during which each participant had the opportunity to speak freely. This process stimulated valuable collaborative discussion that informed the subsequent titling and captioning of each photograph. Following group dialogue, participants summarized the concepts and themes that emerged throughout the session, and briefly discussed the next week’s topic.

All participants also completed a brief anonymous questionnaire capturing general demographic characteristics and categorical information regarding their interactions with the mental health system across paediatric and adult care realms. Given this study’s qualitative research design, outcomes are not generalizable to the larger population of interest; rather, insights gleaned through this questionnaire served to contextualize participants’ photographs and responses to guided questions.

Data Analysis

Thematic analysis of participants’ experiences with the mental health system during the transitional period was conducted using a descriptive qualitative approach that combined pile sorting techniques (Bernard, 2002) with Strauss and Corbin’s (1998) constant comparative method, in order to develop an integrated coding structure that accounted for both visual and narrative data. For brevity, analysis of focus group dialogue and direct quotations are reported separately (Jackson et al., 2022). Following collaborative photo-elicitation discussion during each focus group session, participants codified their own printed photographs and corresponding written elements, by assigning titles and elaborative captions. TAY then categorized images into mutually agreed upon piles that best reflected the thoughts and feelings evoked upon observation, when reading the attached title and caption, and by recalling pertinent group dialogue. While this approach was non-prescriptive in nature, participants were asked to adhere to three basic criteria when pile sorting: (a) all photographs could not be assigned to a single pile; (b) all photographs could not be assigned to their own separate piles; and, (c) each photograph could only be assigned to one pile. Upon completion, participants applied a descriptive label to each pile produced, which accurately represented all photographs belonging to a particular set.

Resulting codes, along with a list of all photograph titles, captions, and pile labels were assembled by the Graduate Student Researcher and presented to the group for discussion and approval during the subsequent focus group session. Participants were given the opportunity to accept, reject, or modify codes identified with appropriate rationale. Following the final focus group session, participants were invited to take part in an optional data analysis meeting to collectively cluster codes into categories and ascertain overarching themes (Strauss & Corbin, 1998). While many participants demonstrated interest in the data analysis process, TAY requested that an executive summary of study findings be sent to all participants following the completion of the project, in place of an in-person meeting.

Rigour and Authenticity

In an effort to ensure trustworthiness and rigour throughout the research process, an audit trail was generated, encompassing meeting minutes, analytical memoranda, and correspondence, to account for the inherent fluidity and evolution of the study purpose (Cho & Trent, 2006). Transactional validity was further enhanced through the triangulation of data sources, collection strategies, and theoretical positionality, in order to construct a more robust and accurate picture of this community’s reality (Guba & Lincoln, 1994). Finally, methods were consistent with the collaborative underpinnings of YPAR, and incorporated regular member-checking activities to ensure mutual agreement upon emerging themes, joint interpretation and validation of findings, and involvement in the brainstorming of knowledge dissemination initiatives. In keeping with this participatory approach, field notes were not used as a source of data collection, as external observations and subjective interpretations may have influenced the coding and subsequent themes generated. Accordingly, such precautions prevented an inequitable distribution of power between the researcher and participants.

Authorization for this study was obtained through delegated review by the Health Sciences Research Ethics Board (HSREB) of Western University. An approval letter for protocol 2019-112971-21550 was received from the HSREB on February 19, 2019. All participants provided informed verbal and written consent to take part in this study. To mitigate ethical concerns inherent to both the Photovoice method and TAY with mental health challenges, several precautions were taken to ensure participant safety. These included a comprehensive training session prior to study enrollment that outlined photography best practices and consent procedures, personal mental health promotion strategies and crisis resources, and group expectations regarding confidentiality and collegiality. Between focus group sessions, participants received weekly check-ins via phone or email to facilitate continued engagement and wellness throughout the Photovoice process. Several other strategies were used to guard against emotional distress and participant burden during photo-elicitation sessions, including the use of relaxation exercises and meaningful distraction techniques, reimbursement for travel expenses and the provision of a cost-free hot meal, as well as the careful consideration of convenience, comfort, and privacy when selecting meeting locations. A more extensive description of all ethical considerations and associated procedures are reported elsewhere (Jackson et al., 2022).

Results

Participants

This study garnered a total of eight (n = 8) participants, ranging from 19 to 23 years of age. All TAY enrolled were born in Canada, with a majority of participants self-identifying as Caucasian, women, single, and of heterosexual orientation. Men, those in a romantic relationship, as well as Black, queer, gay, bisexual, and pansexual identities were also represented. Educational attainment varied; however, most participants indicated that they had completed either a secondary school diploma or university degree, and half of participants reported having secured full- or part-time employment. While most TAY did not align with a particular faith, there was diversity among religious beliefs, including Christianity and Judaism. Results also demonstrated considerable socio-economic variability, with self-estimated annual household incomes ranging from $20,000 to over $100,000 (CAD). Having received a combination of child/adolescent and adult psychiatric services, most TAY rated their transition as either negative or very negative, and their current mental health status as only fair or poor. Three-quarters of those surveyed believed appropriate services were available, but not accessible—citing financial cost and wait times as the most significant barriers to access. While one participant specified that the non-inclusive nature of psychiatric supports also served as an important obstacle, a majority felt that mental health care providers were respectful of their personal identities. Favourably, seven participants reported feeling actively included in care decisions, with varying levels of involvement by allies such as family members, caregivers, or close friends. All eight TAY were highly engaged throughout the duration of this study, having attended each scheduled meeting. However, four participants were unable to submit their photographs in advance of one or more weekly focus group sessions. In such instances, TAY were invited to participate in all photo-elicitation activities, but were asked to assume an observational role during the ‘gallery walk.’

Photographs

Nine of the 24 photographs that guided focus group discussions are presented below. Each is categorized by weekly topic—(a) the good; (b) the bad; and, (c) the vision—and further subclassified according to the set of images formed through the use of Bernard’s (2002) collaborative pile sorting technique. As a group, participants assigned a descriptive label to each resultant set, which serves as the subheading under which photographs are presented. Participant-selected titles and captions accompany all images, along with brief narrative descriptions of the photographs’ subjective meaning and significance. These were derived from participants’ written reflections and verbal exposition during the ‘gallery walk’ portion of focus group sessions—an opportunity for TAY to each discuss their photographs in turn, and without interruption. While each image was captured by a single photographer, its shared meaning and implications were determined through iterative group discourse and analysis. Decisions regarding all themes and photographic narratives were made collaboratively, and should therefore be considered a product of the collective. Indeed, the descriptions below reflect mutual opinions and common experiences that were endorsed by all participants.

The Good

This initial topic pertained to participants’ positive experiences during the transition from paediatric to adult psychiatric services. While at first glance, the images appear highly diverse, three central themes were identified by TAY as transcending multiple photographs.

Fresh beginnings

The images belonging to this set represented a dramatic shift in perspective. While all participants alluded to the challenges associated with their transition process, each were able to derive meaning from such complexities and perceive positive outcomes that manifested accordingly. Figure 1 explores a phenomenon in which hazy treatment objectives are brought into focus upon entering adulthood. The handheld design of the mirror was a deliberate artistic choice by the photographer, signifying enhanced agency, influence, and maturity associated with aging out of paediatric mental health services. A clearer sense of direction, largely attributable to greater involvement in one’s own care, restores the horizon to an image of hope and beauty, rather than confusion and darkness.

Figure 1.

Clarity. “A new perspective, a clearer vision—in your hands.”

Hope

This second set of photographs encapsulates the endurance of optimism and future orientation in spite of adversity. Participants felt the word HOPE was particularly appropriate for this theme, given its acronym for Hold On, Pain Ends—a widely-used mantra within mental health circles. Figure 2 depicts the pathway to adult psychiatric services. Situated within a dark and secluded area, the path appears daunting and isolated, with its final destination hidden from sight. Prescriptive and inflexible treatment protocols often leave TAY feeling trapped and powerless to change directions when warranted. Past experiences along one’s mental health care journey can be utilized to inform future therapeutic decisions, like vines woven among the archway overhead. Such learnings may help TAY to ‘chart their own course,’ trusting that while the road to recovery may be hazy and somewhat foreboding, everyone walks along a unique path, and at their own pace.

Figure 2.

Moving forward along a path. “The knowledge we have is represented in the vines on the metal arch, and we can use that to better our paths into the future.”

The end

The final set of images pertaining to the first weekly topic represented the culmination of adolescence, and its associated psychiatric resources. Figure 3 features a closed blue door, and is illustrative of the pivotal moment when TAY must say goodbye to paediatric mental health services. While this abrupt shift is undeniably difficult, participants considered it to be integral to their personal development, feeling as if they had outgrown many of the supports to which they had become accustomed. Reflective of the colloquialism ‘when one door closes, another opens,’ this door also demonstrates new possibilities, and the decision-making capacity of TAY who may not only choose whether to proceed forward, but also how they go about doing so. Hesitancy to accept such new opportunities can be thought of as knocking on a stranger’s door before entering. By cultivating a welcoming and supportive environment, or by extending an open invitation, healthcare professionals can help to ease the anxieties of TAY choosing to take this daunting first step.

Figure 3.

Open door. “When one door closes, you are the key to a new one.”

The bad

Selecting images for the second weekly topic was described by participants as being significantly less challenging. All considered their transition process to be primarily negative, despite acknowledgment of specific positive elements.

Bare

This first theme is centered around the concept of vulnerability. While the specific trajectory endured by each participant was vastly dissimilar, many spoke of moments during the transitional period when they felt invalidated, unsupported, and helpless. Figure 4 is an image of a stuffed bear that serves as a dog’s chew toy. With its stitching torn and padding exposed, this bear has been ‘chewed up and spit out’—akin to participants’ experiences of mistreatment, neglect, and/or abandonment by mental health services.

Figure 4.

Bear. “Chewed up, spit out, beat up, and put through the wringer.”

Cracks

While the visual similarities between the images assigned to this set were uncanny, each photograph was nuanced in its portrayal of insecurity, distance, and incongruence. A crosswalk signifying the disjointed progression from adolescent to adult services is depicted in Figure 5. Crossing from one side of the street to another is a potentially dangerous task in which pedestrians are vulnerable to oncoming traffic. Navigating a busy intersection without robust safety measures such as traffic lights or crossing guards increases the level of risk associated with this activity. Participants suspected that TAY who are adequately supported by targeted transition services or personnel may experience better mental health compared to those who must transverse this chasm alone.

Figure 5.

The gaps. “There lies a gap between adolescent and adult treatment.”

Choiceless

The third set of photographs that was reflective of negative transition experiences, demonstrated confusion and a perceived loss of autonomy. Figure 6 shows someone carrying shopping bags. This image can be interpreted quite literally, as it symbolizes the need to shop around for accessible and effective mental health services. This process can be both tiresome and expensive, requiring TAY to search blindly for resources without the requisite education or guidance regarding available treatment options. Transition support beginning in paediatric care may help to mitigate the stress and financial burden associated with independent system navigation upon entry into adulthood.

Figure 6.

Shopping around. “The burden of carrying around a bag of emotions while seeking the right fit for care.”

The vision

The final weekly topic tasked participants with capturing phenomena representative of optimal mental health care across the transitional period. Resulting images generated lively discussion with several innovative solutions posed.

Stepping Stones

Three photographs were categorized under this theme, which broadly illustrates the gradual and stepwise nature of ideal transition processes. The puzzle pieces featured in Figure 7 are a work in progress. Collectively forming a single image, the assembly of these pieces symbolizes the many people and agencies that must effectively collaborate to support TAY with mental health challenges. Each stakeholder is regarded as an invaluable component of the transition process, just as all pieces must be present in order to complete a puzzle. While pieces are incongruent and may not always fit together perfectly, client-centred care philosophies should ultimately guide the direction of treatment, ensuring that the psychiatric needs of TAY are prioritized above the ideas or perspectives of individual health professionals, caregivers, or allies.

Figure 7.

Pieces. “Piecing together the transition process.”

Clarity

Images assigned to this set represent the simplicity, transparency, and precision desired by TAY throughout the transitional period. Clear blue skies can be seen through the window photographed in Figure 8. Optimal psychiatric care for TAY would feature similar lucidity, conducive to direct two-way communication between emerging adults and healthcare professionals. While closed at present, this window has the capacity to open, representing barrier-free access to mental health services.

Figure 8.

Breath of fresh air. “Opening the windows of opportunity.”

Light at the end of the tunnel

This final theme suggests that positive transition experiences can be achieved through creativity and flexibility. The rainbow hot/cold compress pictured in Figure 9 demonstrates the need for versatility and customization across mental health interventions. Generalized, impersonal treatment programs do not account for individual differences in psychiatric rehabilitation and recovery. As such, healthcare providers should continuously adapt their clinical approaches—exhibiting warmth and compassion when possible, while also setting firm professional boundaries and clear expectations consistent with tough love. The rainbow is also representative of the light that emerges following a storm. Through the enhancement of self-efficacy and resilience, TAY should be supported by health professionals to learn effective coping strategies that instill hope during the darkest of times.

Figure 9.

Find a rainbow. “There is hope at the end of the storm.”

Discussion

Issues explored through photo-elicitation discussions were deeply moving and impactful. The balanced nature of guided weekly photography topics resulted in a thorough exploration of the mental health care transition process for TAY (i.e., the good; the bad; the vision). Use of the Photovoice method effectively facilitated collaborative inquiry and reflection (Ohmer et al., 2013); thereby illuminating youth perspectives and eliciting meaningful discussion regarding the strengths and shortcomings of existing mental health services, and opportunities for more seamless and supportive care transitions that may bridge the gap faced by Canada’s TAY (Canadian Paediatric Society, 2022; Ministry of Children and Youth Services, 2012; Wiens et al., 2020). Further, engagement in the Photovoice process proved therapeutic in and of itself. Participants voiced a resounding appreciation for both individual photography and group photo-elicitation sessions. By using art as a medium to deconstruct and ascribe meaning to their mental health care transitions, participants experienced a unique sense fellowship and healing.

Participant insights closely aligned with emerging international literature regarding the need for TAY-oriented mental health services. Research in this field commonly adopts an interpretive or descriptive lens, and relies upon traditional qualitative methods such as case studies, focus groups, and semi-structured interviews to explore the lived experiences of the TAY demographic (Broad et al., 2017; Cleverley et al., 2020b). Findings from such analyses reveals that frustration with the mental health system often leads to untimely withdrawal from necessary psychiatric supports (Kaligis et al., 2021; Murcott, 2014). This already-turbulent period of change corresponding with various developmental milestones and role transformations (Hochberg & Konner, 2020; Sawyer et al., 2018), is further complicated by the abrupt shift to adult psychiatric services. Patient narratives across studies echo a resounding sense of distrust and abandonment during this time of institutional flux and instability (Burnham et al., 2015; Munson et al., 2011; Stunden et al., 2020). Young people consistently voice concern regarding the loss of established clinical relationships and therapeutic interventions, and report feeling unknowledgeable and ill-equipped to navigate this transition independently (Cleverley et al., 2020a; Fegran et al., 2014; Jivanjee & Kruzich, 2011). Study implications not only reflect the lived experiences of study participants, but also growing evidence transcending various disciplines and care domains. Change within this field will necessitate collaborative efforts among professionals, organizations, and broader socio-political structures, as well as the thoughtful integration of TAY perspectives into actionable recommendations and deliverables.

Participants craved meaningful connections with mental health care providers rooted in empathy, trust, respect, professional intimacy, and an equitable distribution of power (College of Nurses of Ontario, 2019). In line with findings from comparable qualitative studies (Cleverley et al., 2020b), support and guidance by professional allies were perceived to be inextricably linked to a smooth and successful transition process. As such, participants advocated for the development and implementation of transition-specific roles to assist all TAY with mental health challenges, irrespective of psychiatric services acquired. Conceptualized as an interdisciplinary team assigned to those approaching the paediatric-adult care nexus, participants agreed that proactive planning with informed professionals would help to mitigate the confusion and trepidation associated with such a dramatic change. Operating as a single unit and working toward common treatment goals, transition teams may naturally result in more effective communication and collaboration among care providers. By mitigating ambiguities, oversights, and duplicated efforts associated with existing referral processes, a team-based treatment model could potentially streamline the progression from paediatric to adult psychiatric services. When asked which professional would be best-suited to lead such a team, participants felt that an Advanced Practice Nurse (i.e., Clinical Nurse Specialist or Nurse Practitioner possessing a graduate degree) with extensive knowledge and clinical experience relevant to TAY mental health would be most appropriate, particularly given the anticipated care coordination and case management functions associated with this role.

While the desire for holistic, comprehensive transition support was made clear, participants strongly endorsed that a heightened emphasis be placed upon TAY-led approaches. Valuing flexibility and customization, participants envisioned services that catered to individual needs, rather than adopting standardized one-size-fits-all treatment protocols. Having encountered several invalidating and disempowering professionals and services throughout their care trajectories, participants also discussed the importance of exercising personal autonomy. The opportunity to engage in decisions regarding one’s own treatment was considered a determining factor when evaluating the fit of care providers or therapeutic interventions. Also deemed significant, was the establishment of care consistency and reliability. Several participants discussed the time and energy required to build authentic connections with mental health professionals. For TAY who had been habitually disappointed by psychiatric services, many were understandably hesitant to embrace the openness, honesty, and vulnerability necessary for their recovery. As such, sustained patient-provider relationships should be prioritized, as a strong rapport was cited by participants as having facilitated increased treatment engagement and improved mental health status. Conversely, unpredictability was described as causing heightened levels of fear and anxiety; thereby thwarting rehabilitative efforts. Such implications mirror those found across international studies pertaining to this demographic (Hawke et al., 2019; McGorry et al., 2013).

Many TAY involved in this study also advocated for more welcoming and inclusive admission processes across psychiatric care settings. During focus group sessions and individual interviews, participants detailed countless traumatizing experiences that ultimately instilled a deeply-rooted fear of professional psychosocial support. The convoluted, highly impersonal, and institutional nature of most intake procedures have only perpetuated the stigmatization of mental health challenges. For many participants, help-seeking behaviours were actively avoided until an acute state of crisis was reached, at which point they were forcibly brought to their local Emergency Department. Once there, it was not uncommon for participants to encounter security guards, locked padded cells, and several-day waiting periods in hospital hallways before being admitted to an inpatient psychiatric program, or referred to an appropriate community resource. TAY told a recurring tale of needing to hit “rock bottom”—a functional decline that not only prompted their willingness to accept professional support, but was also frequently perceived as a prerequisite for their concerns to be deemed worthy of such support.

Significant legislative reform and policy development will be required in order to enact necessary clinical practice changes, such as those outlined above. Already in effect at several leading psychiatric facilities, including the Centre for Addiction and Mental Health (2019) in Toronto, participants strongly advocated for the restructuring of rigid age classifications guiding psychiatric service delivery. Arguing that treatment should cater to developmental stage rather than chronological age, participants requested the implementation of a third category intended specifically for TAY, situated between paediatric and adult mental health care divisions. Envisioned as extending from ages 16 to 25, services for this demographic would overlap with child/adolescent supports available to individuals under 18, as well as those targeting adults aged 18 and over. This intermediate step would allow TAY who fall within more than one category to choose services that best align with their psychosocial maturity, care priorities, and treatment goals. Young people who would prefer to progress directly to adult care may do so, while those seeking a more gradual transition process may access TAY services at any time within a 10-year span. Such flexibility is particularly advantageous for treatment-naïve youth experiencing their first psychiatric episode during the transitional period. In such cases, TAY-specific services may provide a therapeutic cushion that eases one’s entry into the exceedingly complex mental health system.

The reallocation of government funding to community services rather than inpatient psychiatric programs was another recurring topic of discussion, as TAY felt that greater emphasis should be placed upon preventative care measures and early intervention strategies compared to downstream stabilization and management of severe, highly debilitating mental health challenges. Many participants were not considered eligible for desired psychiatric supports until they had experienced an acute crisis episode that demonstrated the legitimacy of their concerns, and finally initiated referrals to appropriate mental health professionals. Consistent with findings across extant literature, participants hypothesized that the advent of more widespread and robust health-promoting resources might potentially reduce the prevalence of risky self-injurious behaviours and suicide attempts by TAY (Cleverley et al., 2018a; Sukhera et al., 2017). Further, increased investment in publicly funded services may also improve the availability and quality of community supports; thereby, indirectly easing the financial burden incurred by many TAY left with no choice but to pay out-of-pocket for private mental health care (Moroz et al., 2020).

Policy change related to the involvement of allies in psychiatric treatment was also discussed, as many TAY described relying on at least one non-relative throughout their mental health journey, whether for advocacy, guidance, or emotional support. Unfortunately, common regulations and policies pertaining to such inclusion are limited to immediate family members or legal guardians. For several participants in this study, parents or other blood relatives were not only considered unhelpful, but were also thought to have actively contributed to existing mental health challenges. While close friends, mentors, or romantic partners were often described as playing a highly significant role in TAYs recovery journey, their formal involvement in treatment discussions was seldom permitted. Consistent with a TAY-led philosophy described above, participants in this study felt that TAY should have the authority to identify the specific support person(s) they wish to have included within their own circle of care.

A final implication relevant to health policy concerns the secure access and distribution of TAYs clinical records. While many participants stated that information pertaining to their treatment was shared among mental health care providers within the same organization, external professionals were often not privy to such findings. As a result, incomplete health histories and disjointed communication between clinicians slowed the progress of ongoing therapeutic interventions—a complaint echoed by participants across studies and geographic locations (Cleverley et al., 2020b; Paul et al., 2018). Due to an unfamiliarity with TAYs past medications, therapies, and diagnoses—including those that were ruled out—some participants were required to unnecessarily repeat treatment regimens that had already been deemed ineffective. Frighteningly, ignorance of high-risk behaviours, critical incidents, or previous hospitalizations, also bore the potential for more devastating consequences, including physical harm to oneself or others. While retrieval of personal health information would require the formal consent of TAY or an appropriate substitute decision maker, participants expressed a clear desire for their clinical records to be more readily accessible by the professionals entrusted with their care. Furthermore, an enhanced knowledge and awareness of one’s own health history was seen as a source of empowerment for TAY with an otherwise-limited sense of personal autonomy.

With respect to health education, study findings reinforced the need for a fundamental shift in mental health literacy, in order to increase public knowledge and awareness of basic psychiatric principles, and particularly those unique to the TAY population. These efforts would be dual-purpose in their promotion of psychosocial health and wellbeing, and simultaneous reduction of societal stigma and intolerance (Richards & Vostanis, 2004). Such change will not come easily, as most adults worldwide lack a basic understanding of the terms ‘mental health’ or ‘mental illness,’ despite its global prevalence. Further, the inherent fluidity of mental health status is not common knowledge (Palmer, 2021). Typically thought of as the absence of mental illness, a common misconception exists that healthy people do not experience such psychological variation. The truth, though, is that everyone encounters occasional cognitive, mood, and expressive abnormalities that may impact daily functioning. However, when one’s thoughts, feelings, and behaviours become problematic to the extent that they are no longer able to cope with intrinsic and environmental stressors independently, individuals may benefit from professional support irrespective of a formal psychiatric diagnosis (APA, 2013). A basic understanding of such principles is critical to ensuring that those struggling receive help before symptoms or associated maladaptive coping mechanisms become unmanageable.

While children and adolescents would undoubtedly benefit from the integration of comprehensive mental health teaching into standard academic curricula (Kutcher et al., 2018; Kutcher & Wei, 2020), it is also necessary that educators and clinicians become more knowledgeable. Since mental health challenges among TAY commonly impact academic performance and social interactions with peers, participants felt that comprehensive training for teachers and school administrators regarding early recognition and assistance may prevent TAY from falling through the cracks. Furthermore, they hypothesized that the creation of a dedicated transition worker position assigned to all secondary schools, may facilitate a smoother progression to adult psychiatric and social supports following graduation. For students with mental health challenges choosing to pursue continued studies at a college or university, this role may prove especially useful when liaising with post-secondary psychiatric services. Many participants encountered considerable difficulties when attempting to secure suitable education-related mental health resources and academic accommodations. Accordingly, the endorsement of individual learning needs and appropriate modifications by a recognized in-school mental health professional, may expedite such processes. Through the establishment of a certification course with tailored subject matter, the transition worker position could likely be assumed by a Registered Nurse and/or Guidance Counsellor—roles which are permanent fixtures in most secondary schools throughout the province, and already provide informal mental health support to students in need (Laforêt-Fliesser et al., 2015; MacDougall et al., 2015).

Tailored assessment and intervention strategies for TAY with mental health challenges would require the implementation of similar training programs for healthcare providers, and particularly those practicing outside of the psychiatric field. Mental health is a pervasive issue that infiltrates every discipline and care setting, and should therefore be integrated into core curricula for all budding clinicians. Despite psychiatric diagnoses and treatment options having evolved significantly over recent decades, public knowledge of mental health care is limited at best, and unfortunately, health providers are no exception. Often less respected than other medical specialties, health professionals themselves perpetuate fallacy and stigma pertaining to the psychiatric discipline (Lieberman & Ogas, 2015). Thus, it is necessary to enhance understanding and garner interest in mental health among care providers, to promote continued therapeutic advancement in this field. Clinicians must be prepared to identify signs and symptoms of psychological distress or dysfunction, and to respond swiftly and appropriately to urgent disclosures, regardless of their specialty or place of work.

When discussing preparatory measures for TAY approaching the transitional period, participants requested the advent of a seminar or class that would provide a general overview of common responsibilities associated with adulthood. An enhanced familiarity with simple tasks such as budgeting, scheduling appointments, navigating public transportation, or preparing meals was believed to significantly reduce anxiety concomitant with this transition. Owing to the unique interests, needs, and priorities of the TAY demographic, study participants also envisioned a peer mentorship model for TAY aging out of paediatric mental health services. The opportunity to learn from relatable youth who underwent a similar transition was highly appealing to participants who felt that many health professionals had become jaded and lost their compassion for those encountering such monumental change for the first time. Much like existing roles such as Peer Support Workers or addiction-related Sponsors, a TAY Peer Mentor could offer allyship, guidance, and reassurance to those navigating the nuances associated with the transition process. While undoubtedly helpful for the recipients of such mentorship, recruitment of peer volunteers would require careful consideration of emotional readiness, as well as coaching regarding the establishment and maintenance of professional boundaries in order to prevent compassion fatigue, vicarious trauma, or burnout (National Child Traumatic Stress Network, 2011). Offering transition support through a combination of cultural responsiveness, relationship building, collaborative goal setting, role modelling, and promoting self-care, the Young Adult Peer Mentoring (YAPM) program through the Massachusetts Department of Mental Health (2017) is just one example of many new and growing psychosocial care initiatives designed to support TAY development and recovery through shared lived experience.

Conclusion

The wealth of information and insight gathered through this Photovoice project underscored the tremendous value of YPAR approaches and participant perspectives in health research, whether gathered through visual media or verbal discussion. While many existing studies in this field adopt an interpretive or descriptive approach (Broad et al., 2017), few embrace an emancipatory or critical framework. Future research pertaining to TAY mental health requires the continued use of participatory approaches that prioritize youth engagement and collaboration (Anyon et al., 2018; Elias, 2017; Ozer, 2016). Extending beyond consultative efforts, active involvement in study design, data collection, analysis, and knowledge dissemination activities affords youth the opportunity to meaningfully contribute to scientific discovery and emancipatory change. Furthermore, the use of progressive visual and arts-based methods enhances creative expression; thereby illuminating ideas and perspectives not easily disclosed through verbal communication, whether due to deliberate suppression, limited vocabulary, or confusion and uncertainty regarding mental health challenges (Drew et al., 2010; Mizcock et al., 2014). Indeed, Photovoice represents an opportunity to enhance equity within qualitative research, not only by appealing to populations that may otherwise be excluded from research projects due to issues of inaccessibility, mistrust, or disinterest, but also by promoting shared leadership and collective decision-making within an otherwise unbalanced power dynamic (Golden, 2020). Participants articulated a desire for the TAY voice to be integrated into mental health advocacy and awareness initiatives, to ensure accurate representation of this age demographic and their unique needs, while also preventing exploitation.

Ultimately, findings contribute to an enhanced awareness of psychiatric service delivery gaps experienced by TAY, and advocate for seamless and supportive transitions that more effectively meet the mental health care needs of this population. Through critical analysis of oppressive institutional protocols, YPAR and Photovoice serve as an incubator for awareness and advocacy that has historically led to significant policy reform and clinical practice revisions (Anyon et al., 2018; Ozer, 2016). Furthermore, emergent themes elucidate opportunities for clinician involvement in the enactment of disruptive solutions to address this issue.

If we are to truly enhance the psychosocial wellbeing of this underserviced population, health professionals must look to innovative and novel approaches to promote the rehabilitation, recovery, and resiliency of young people (Halsall et al., 2019; Hart & Maslow, 2018; McGorry et al., 2013; Viner et al., 2012). Health care providers are uniquely positioned to advocate for the needs of youth transitioning to adulthood through direct patient contact across the care continuum (Kalinyak et al., 2016; Moynihan et al., 2015), and thus have the capacity to influence meaningful systemic change for this demographic (Fontana, 2004).

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

This work was supported by the Canadian Institutes of Health Research [Canada Graduate Scholarship––Master’s]; and the Registered Nurses’ Foundation of Ontario [Research in Mental Health Nursing Award].

ORCID iD

Brianna Jackson

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