Smiley hates where she lives.
It is 2012 and Smiley, a young woman in her early 20s, lives in a single room occupancy (SRO) building in Vancouver. She wants to hang out with her friends in her room, where she feels safe, but the SRO only allows one visitor at a time.
“I don’t like it. It’s their rules. It’s really annoying,” Smiley said. “It sucks, because I’m not a crackhead or a junkie. They shouldn’t put me in places like that.”
Smiley has been diagnosed with psychosis, a mental disorder where people show signs of delusions and hallucinations. She’s one of 17 young people between the ages of 18 to 24 in Metro Vancouver recruited for a study at the University of British Columbia. All participants have experienced symptoms of psychosis in the past three years.
“Our study provides a window into what young people think about the mental health services they receive and what they feel helps and hinders their well-being,” said lead author Shalini Lal, an assistant professor at the University of Montreal’s school of rehabilitation and a researcher at the University of Montreal’s Hospital Research Centre (CRCHUM). Lal conducted the study as part of her PhD work at UBC’s faculty of medicine within the graduate programs of rehabilitation sciences.
Through interview excerpts with the youth from November 2010 to March 2012, the study highlights the impacts of mental health services on these young people, including their interactions with psychiatrists, case managers, social workers, occupational therapists and supports for housing, recreation, and employment.
“Eliciting young people’s feedback will lead to better planning and coordination of services that they will find engaging, meaningful and effective,” said Lal.
The study identifies many different types of supports the youth found helpful, including group therapy and positive interactions with peers and peer support workers.
“The groups were very helpful for getting me to acknowledge that I actually had an illness,” said Kevin, one of the youth.
“(The peer support worker) explained that with the right combination of medications or professional help, you could actually treat the symptoms and live a normal life… a good role model to see that you could recover from it,” said Jake, another youth involved in the study.
Other types of support the youth identified as helpful were accompaniment to appointments, providing help in completing employment assistance forms and facilitating the process of returning to school. Youth also appreciated emotional support like signs of genuine kindness, hope and encouragement from service providers.
“Even small gestures were seen as helpful, ones we may take for granted, like a care manager shaking their hand when they walked in the door,” said Lal. “That gesture of respect has a lot of meaning for someone stigmatized by mental illness.”
When it came to hindrances, some youth felt pigeonholed by their mental illness, being offered services that didn’t reflect an identity outside their disorder. A young man named Nelson, who had acting aspirations, told Lal about his disappointment when his job counselor connected him to a theatre company dedicated to “people affected by mental illness.”
“The most annoying thing is that everything is for mental health reasons and I just don’t want this,” he said. “If it’s a film thing, I don’t want it to be just for mentally ill, and just to address stuff like that. I want it to be, just normal.”
Darren, a 20-year-old living in a downtown youth shelter, didn’t own a cellphone and could not receive calls directly from the shelter. His sense of independence and social life were negatively impacted by the shelter’s rules of no Facebook access, which was his main way of staying in touch with friends and family. Lal said in some cases the youth also interacted with outreach workers online, which proved useful to providing support to people who would not otherwise receive it any other way.
Some youth felt “ghettoized” by their housing situation, only being able to access SROs that housed many others living with mental health and substance abuse issues. Philip, a young man struggling with substance abuse in addition to his psychosis, said living in such an environment threatened his sobriety.
“Every time you walk down the street you see someone on a crack pipe, a crystal meth pipe, a pot pipe or drinking alcohol every block you walk here,” he said. “And it’s nothing but trigger after trigger here, so it’s not the right environment for people trying to stay sober. Just being around these kinds of people, it’s not the right place for me.”
The last hindrance was how impersonal the youth felt some of their encounters could be with different support workers, including doctors or therapists.
“It was always kind of detached, and I always felt like we were on the clock and not really supported to talk about things like that [relationships]… It just wasn’t an environment where I felt comfortable with it,” said Kevin.
Lal said she has seen more funding and attention being paid to the mental health needs of young people in Canada, especially over the past five years. Lal also said more effort is needed in using tools and resources that cater to youth, including the use of technology to provide support. As well, different sectors of the community, including housing, employment and mental health, need to work more closely together, so people don’t feel bounced around.
“People often think that it’s up to individuals alone to overcome adversity, to deal with a mental illness,” Lal said. “For young people, their resiliency largely depends on their ability to navigate and negotiate towards resources, which are all too often substandard, inconsistent or not tailored to their needs.”
“We learned from this study that when services do match young people’s needs and preferences, they can really make a positive impact on their well-being.”
The study, “Impact of Mental Health Services on Resilience in Youth with First Episode Psychosis: A Qualitative Study“, was published in print this year in Administration and Policy in Mental Health and Mental Health Services Research.
Lal’s co-authors are Michael Ungar at Dalhousie University, Ashok Malla at McGill University and Carl Leggo and Melinda Suto at UBC.
The 17 youth involved in the study had an average age of 22 and 71 per cent were male. The youth were white, First Nations, Asian and Latin American. Seven of the youth had less than a high school education, five had completed high school, four had some university-level education, and one had completed a bachelor’s degree. Names in this study were changed to protect the youths’ identities and were chosen by the youth themselves. They are not available for interviews.
Lal was supported by a doctoral scholarship award from the Canadian Institutes of Health Research.