Pre-engagement consultation results
Youth and parents identified several considerations and approaches to supporting youth and parent engagement. They identified the importance of including youth, parents, and caregivers with lived experience of mental illness or seeking paediatric mental health care in an ED setting while minimizing the potential for distress. Strategies to minimize distress included holding engagement sessions in partnership with community agencies that offer peer and professional support. Youth requested that written information be provided during engagement sessions (wall posters, informational hand outs, etc.) to reinforce the objectives of the session and help those participating to maintain their focus without having to ask for clarification. Youth valued opportunities to provide written information to the research team both during in-person sessions and afterward to minimize potential distress associated with verbalizing their contributions.
For some youth or parent consultants, preparing for our conversations was the first time they had discussed their respective ED experiences with each other. They identified important differences in their reasons for seeking ED care and stressed the need to offer separate and joint (if requested) youth and parent or caregiver engagement sessions to allow for open conversations. Parents reported previously having had limited opportunities to discuss their own perspectives and valued incorporating these into research priorities.
Youth valued the inclusion of potentially marginalized groups, including those with limited literacy, unstable housing, and those who had a need for but were not currently in receipt of formal mental health and addictions services. High functioning youth (such as those enrolled in university) reflected that they were often excluded from participating in university-led research projects for course credits due to their mental illness but that in this instance were uniquely qualified to participate and suggested offering youth in-course credits where applicable for their participation. The research team collaborated with a local university to offer participation credits for research engagement.
Youth and parent engagement results
Youth varied in sex and gender, education, socioeconomic status, literacy, and mental health care experiences. They were all within the age range of 16–25 years-old. Four in-person group engagement sessions were held in total (three youth sessions and one for parents or caregivers), hosted by either the IWK Health Centre or our community partners, with an average of 8 participants per session. One youth shared a written statement at an in-person group session. One telephone session was held with a parent living out-of-town. Youth varied in sex and gender, education, socioeconomic status, literacy, and mental health care experiences. All parents who participated were female.
The following topics were highlighted as themes of research that the youth and parents we engaged with would like to see pursued and studied.
Access to mental health and addictions services
Youth and parents identified lack of access to mental health care in primary care or community settings and the relative accessibility of the ED as likely contributing to increasing ED use and as important areas for further research. Youth and parents described common perceptions that going to the ED was an effective means of accessing mental health services in a timely manner. Some also described specific barriers that inhibit young people’s ability to seek mental health care, including not having a family doctor, not having a health card, or not wanting to provide a health card or identification to health services.
The emergency room is the only place to go. A 6-month wait time to see a psychiatrist is way too late. There is nothing in rural areas.
Youth clarified that access to timely care was an important issue throughout the experience with mental illness and was not limited to its onset or during crises. Even during receipt of formal mental health services, youth turned to the ED, often more than once, for timely access to mental health professionals while they were learning to manage their symptoms.
Gaps in care
Gaps in communication between the ED and other parts of the mental health system (i.e. community mental health, primary care) and with parents or caregivers were consistently noted to be problematic and identified as areas for improvement. Youth and parents suggested that gaps in communication and coordination of care were likely contributing to presentations to the ED.
It would have been helpful if the parent had an opportunity to communicate with the health care provider by writing things down. Helps the parent when the health care provider is specific.
We are starved for good communications in healthcare.
Standards of care
There were discussions at all engagement sessions around standards of mental health care generally across health care, including primary care, the ED, and in mental health and addictions services. Youth and parents identified a need for core mental health care skills among healthcare providers because “everyone will see mental health in their practice at some point.” They trusted the quality of care provided at the ED, where they could access mental health and addictions clinicians.
There has to be a basic level of knowledge and confidence (of mental health) among people working in health care.
Youth and parents perceived stigma from health care professionals toward mental health and addictions patients. Some were concerned that clinicians outside of formal mental health services were ill-equipped or not specialized enough to provide care, leading to increasing help seeking at EDs.
You know what you’re getting when you go to the emergency room, you’re going to see someone and hopefully be taken seriously.
Experience of care
While not suggested by participants as a contributor to increasing use of the ED for mental health concerns, the experience of ED care was identified as an important area for future research and service improvements. Effective communication and empathy from healthcare providers and administrative staff in the ED was identified as a pivotal issue. Both youth and parents noted that effective communication and demonstrated empathy contributed to improved patient experiences. Youth and parents stressed how youth and parents need to feel as though they are being heard, and healthcare providers should “be human” first in how they respond. Parents offered that it can be difficult to have their voice heard as a family member in a room full of clinicians.
It’s not always about the treatment you receive, it’s about how you’re treated.
Socialize with them a bit. Give and receive feedback. Would be nice if people were there to make sure everything was okay.
Opportunities for ongoing engagement
Youth and parents identified specific mechanisms to support future engagement and for sharing ongoing opportunities and progress, including providing multiple platforms for engagement, in-person group and individual consultation, and online submissions via email, the research group’s website, and social media. With respect to social media, youth reported that while they did not use Facebook for social networking with their peers, they used the platform to learn of and participate in activities regarding mental health and addictions and expected our research group to have a presence there. Facebook pages or groups were suggested as primary avenues for connecting with parents, particularly for providing updates on the research. Online newsletters were suggested less frequently.
You should use Facebook and YouTube. Need to use social media, lots of people are not doing it right. It is a good platform- don’t be annoying … avoid notification burnout.
Parents noted that maintaining engagement from parents or caregivers may be difficult depending where the young person is in in their journey (i.e., diagnosis, crisis, recovery) and whether they have other children at home with mental health concerns.
Those participating were universally interested in receiving updates regarding the results of the engagement, including research directions and findings. Marginalized youth were most interested in being consulted for their input on research directions and being informed of results but were not interested in collaborating in research. They reported feeling appreciated by the opportunity to speak directly with a researcher about their perspectives and being heard.
I think this discussion is good, but I don’t want to get emails about research you know? Like I’m glad to be a part of this and that’s cool.
Evaluation of engagement
I’m glad you are asking these questions and actually listening to us.
Youth and parents were offered the opportunity to provide either written or oral feedback to accommodate varying levels of literacy and comfort in expressing their opinions. Questions consisted of six brief “yes/no/somewhat” questions and open-ended opportunities to express what they would like to see the research team do as a result of the consultation and to provide any additional comments. Those participating consistently expressed satisfaction with the engagement, reported feeling able to voice their opinions, that their opinions were heard, and that sessions were worthwhile. Those who participated were not interested in further engagement opportunities for planning research but expressed interest in hearing about the results of ongoing and future research.