Parent and Caregiver Perspectives on Youth Suicide and Systems of Care

Background and Purpose: Suicide is the second leading cause of death among Canadian youth aged 15-24, and most youth who die by suicide have at least one mental health concern. In Canada, youth exhibit significant rates of mental health (20%) and substance use (12%) concerns, coupled with the highest unmet needs for mental health care. Parents of youth who die by suicide describe challenges finding appropriate care for their youth and are often excluded from their youth’s treatment and services. In Ontario, half of the youths who die by suicide had visited an emergency department in the year before their death, with increased post-discharge risks due in part to lack of continuity of care and limited referrals to community mental health care. This study aims to examine parent and caregiver perspectives on the systems of care their youths engaged with prior to suicide.

Methods: Participants were eligible to participate if they were an Ontario parent/caregiver of a youth under 26 who died by suicide in the last 5 years. Recruitment was through bereavement centres, and we conducted virtual semi-structured interviews. We analyzed data using thematic analysis which identifies themes and patterns across the data.

Results: The sample included 17 participants (n=11 mothers, n=6 fathers). Fourteen parents had a son and three had a daughter who died by suicide and the mean age of the youth at the time of their death was 19. We identified the following themes from parent statements: (1) it is important to make our youths’ voices heard, (2) to reduce stigma and improve treatment, mental health concerns need to be treated as an illness, not bad youth behaviour or a parenting problem, (3) schools need to listen to youth and adequately address bullying, (4) there are anti-racism school policies, but they are not consistently applied, (5) suicidal youth are often too low risk for hospital and too high risk for community agencies, (6) there is a need for more compassionate care for youth and caregivers, (7) gender norms negatively affect youth, (8) youth are dying because of a broken system, (9) consent and privacy laws exclude caregivers who are usually the most important source of support, and (10) there is limited support for parents until after our youth die.

Conclusions and Implications: Findings reveal critical gaps in the healthcare system for Canadian youth, emphasizing the importance of involving parents in their youth's care, improving access to services, improving the quality of care, and improving care coordination between emergency and community mental health services.