In Canada, Mental Health Week was established by the Canadian Mental Health Association in 1951 to raise awareness related to mental health and overall well-being. The theme of this year’s Mental Health Week was ‘A Call to Be Kind: Compassion Connects Us All.’ This theme resonated with our research team as it aligned with some of the findings of our SSHRC-funded (Social Sciences and Humanities Research Council of Canada) research study titled, ‘A Critical Exploration of Youth Suicide and Systems of Care: Understanding Perspectives of Parents and Caregivers.’
The aim of this qualitative study was to deepen our understanding of the ‘systems of care’ that served Ontario youth and young adults under the age of 30 who died by suicide, from the perspectives of parents/caregivers. These systems include formal and informal support offered through mental health and addiction services, hospitals, primary health clinics, community centres, schools, and religious or spiritual centres. In this article, we present recommendations from parents of youth who died by suicide. These recommendations aim to enhance the systems of care that interact with youth at risk of suicide, prevent youth suicides, improve mental health and wellness, and provide increased support to youth and their families.
The study, approved by the Research and Ethics Boards of the University of Toronto (#43435) and Université Laval (#139310), involved the participation of 17 Ontario parents who had lost a youth or young adult to suicide. Fourteen parents discussed the loss of a son, and three spoke about a daughter. The youths who died by suicide ranged in age from 12 to 29 years, with a mean age of 18.
These parents had experienced immeasurable loss and grief and shared their stories to make their youth’s voices heard and to prevent this from happening to other families, as underlined by this parent:
“If you do not pull through, nobody will get to know what your son went through. You have to be his voice.” (Parent 1).
We begin by sharing some of the qualities used to describe these youths. These individuals cannot be defined by mental illness, as stated by this mother:
“I think my son would want people to know that he was hurting. That he was an individual, he was a person first. And mental illness didn’t define who he was.” (Parent 11).
Parents described their youth as:
While these youths possessed remarkable qualities, they also faced numerous challenges. Most had multiple mental health concerns, and many also had substance use issues. Most of the youths had experienced bullying by peers, and some also faced discrimination and racism. They had accessed various services through community mental health agencies, schools, private clinics, helplines, and hospitals. However, all of the parents described their youth’s overall experiences with these services as negative.
Parents shared the following recommendations on how to improve services for youth and ultimately prevent suicide:
1 – Improve quality of mental health care
Parents discussed the need for service providers to demonstrate compassionate care, offering dignity and hope, as highlighted by this mother:
“She was treated worse than a criminal in that hospital. I could tell along the way, the staff who cared. It’s having compassion and hope. When you get that sense that staff don’t care, you lose hope, and it was detrimental to her health to be in that environment.” (Parent 8)
2 – Increase access and availability of public mental health services
Parents highlighted the urgent need for available and accessible services for youth with mental health concerns. These parents described dealing with unavailable services, long waitlists, restrictive eligibility criteria, having only virtual services as an option, and services not aligning with the youth’s needs. Many resorted to using emergency departments more frequently than necessary due to the acuity of the situations and the lack of community care. This father emphasized the scarcity of services for both youth and parents:
“There was no help. When she needed help, she got turned away. When we needed help, we got turned away. Even to the point where she got turned away in an emergency room because she wasn’t 16.” (Parent 17)
3 – Enhance continuity of care between hospital settings and community agencies
Parents noted a lack of communication, collaboration, and continuity of care among mental health professionals, particularly between hospital and community agencies. One mother explained:
“There needs to be more continuity between hospital and community and that’s really where it fell apart. The hospital saying that a patient’s not high risk and the community is saying they’re too high risk. There needs to be much more communication between community and hospital when it comes to discharge planning.” (Parent 2)
4 – Improve suicide risk assessments and safety planning
Parents explained that many youths were inadequately assessed and often did have safety plans. As one mother pointed out, “Instead of a safety plan, I picked him up at the hospital. We came out with prescriptions” (Parent 15). Parents also mentioned that mental health professionals frequently minimized the level of suicide risk. One father reported that his son who had symptoms of psychosis and a suicide plan was discharged early from hospital and told to call a helpline if he is not doing well:
“There was nothing in the plan. Call someone for help. That doesn’t make any sense. He’s not able.” (Parent 3)
Parents recommended that hospitals implement a standardized risk assessment to ensure more consistent assessments. Parents felt that risk factors such as previous suicide attempts, suicidal ideation and plan, mental health diagnoses, substance use, trauma history, racism, discrimination, and bullying were not considered. A mother stated:
“I really don’t think they took into consideration, you know, the age, the gender, the self-harm. It was just attention seeking to them.” (Parent 16)
5 – Provide psychoeducation for youth and families
Parents emphasized the importance of providing youth and families with comprehensive information about diagnoses, medications, and safety plans. Most of the parents received minimal information and were not aware of safety plans in place for their youth as stated by this mother:
“It just felt like a lot of fragmented information, bits and pieces that were coming from him or what I could see, but without ever really knowing everything. And as his primary advocate, outside of himself, it’s a tough place to be, not knowing everything…What do you do next?” (Parent 14)
Some parents described medication changes in the two weeks preceding the suicide with no follow-up or information about side effects.
“I found out after, the dosage that he got for the anxiety pill was way too much for his weight and that was kind of making him go crazier…they were for someone who weighs 250 pounds and my son only weighed 100 pounds, maybe 90 pounds. They should at least let the parents know like, exactly what’s going on, you know, and if he’s taking other medication, I still need to know.” (Parent 10)
6 – Involve families in services, treatment, and safety planning
The experience of parents trying to get help for their children with complex mental health concerns and elevated suicide risk within a fragmented and unwelcoming system is hard to express. Although this list is not exhaustive, parents described experiencing intense worry, uncertainty, burden, stress, frustration, desperation, stigmatization, blame, and isolation. Consent and confidentiality policies often create barriers to involving families in treatment. However, even in many cases where youth had provided consent, parents were still excluded from the treatment process. One mother described the challenge of staying hopeful when receiving no support:
“I didn’t feel supported by the system. Most of it was blaming the parent. It was that whole feeling of hopelessness, and I said, I have to keep it together because if I don’t keep it together, my son will see that and he’ll think that it’s hopeless.” (Parent 11)
The frustration and hopelessness was underlined by another parent:
“You’re just trying to help your kid and like there’s nothing you can do. I just felt like no one’s ever going to listen to us.” (Parent 12)
7 – Increase training for service providers
Parents strongly recommended increased training and education for service providers on youth suicide, youth concurrent disorders, safety planning, and working with families. This parent explained,
“A lot of the healthcare providers didn’t have basic mental health training. Like my daughter would say, I’m having suicidal thoughts, and they would say well, just ignore your thoughts.” (Parent 7)
8 – Ensure accountability for bullying, discrimination, and racism
All of the youths in the study had experienced some form of bullying by peers while in elementary or high school, and some had also experienced discrimination or racism. Parents noted that in most of these cases, the traumatic injustices were not addressed, action was not taken, and there was no accountability for the harm caused. A parent explained that schools and mental health services often have policies related to issues such as bullying and racism, but there is no accountability to ensure they are consistently implemented:
“You have to listen to the children who are getting bullied. School should provide an environment where the child can speak freely. There should not be fear of repercussions. Parents are sending their children thinking that this is the most safe environment for their children when they’re out for work. There should be some accountability.” (Parent 1)
9 – Reduce stigma of mental illness and suicide
Parents reported that service providers exhibited stigmatizing attitudes and behaviours related to mental illness, suicidality, certain diagnoses, and substance use. They recommended implementing actions to reduce and ultimately eliminate such stigma among service providers, as it can negatively impact access to services and the quality of care. As one mother stated,
“There was stigma with mental illness, and you were treated deplorably like, not even like a second-class citizen when you went into emerg. If you were saying, you know, I think he’s suicidal or I think, you know, we need to have something addressed and um, there, there was no compassion. It was all behaviour and bad parenting…A lot of them are not treated as individuals. They’re treated as mental illness.” (Parent 11)
Conclusion
We extend our gratitude to the parents who shared their personal and painful experiences, with the hope of improving the systems of care and preventing youth suicide. As a research team, we are committed to using various platforms to disseminate our results and amplify the voices of youths and parents. On May 31, we are presenting our results at the annual Canadian Association for Suicide Prevention conference in British Columbia. We are also preparing two articles for submission to peer-reviewed academic journals, offering a more detailed account of our findings.
As we reflect on Mental Health Week in Canada with a call for compassion and kindness, we conclude with the words of a parent capturing the essence of what her son wrote as one of his final wishes, which was to use his story to help others. This prompted his mother to participate in our study. She shared what her son would have wanted others to know:
“He loved everybody deeply. He would want them to know that everything would be okay, that they could get through it. He would have wanted to let others know that there is hope.” (Parent 2)
Eli’s Place will be a rural, residential treatment program for young adults with serious mental illness. To learn more about our mission and our proven-effective model click here.
Toula Kourgiantakis | Friend of Eli’s Place
Toula Kourgiantakis, Ph.D., RSW, CCFT is an Associate Professor at Université Laval in the École de travail social et de criminologie. Her research focuses on youth mental health and addictions, equitable access to treatment and services, family involvement in youth mental health care, and enhancing education and training for social workers and mental health professionals. Toula is a social worker, psychotherapist, and couple/family therapist with 30 years of clinical experience, and she continues to work with couples and families.
