Characteristics of Study Participants
The sample included 26 individuals with a mean age (±SD) of 42 (±12.3). A variety of stakeholders participated including ED physicians (n=6), social workers (n=4), nurses (n=2), an occupational therapist (n=1); a counselor (n=1); staff/leadership in IYS organizations (n=4); mental health/family workers (n=3); peer support workers (n=2), and parents (n=3). For service providers, the average number of years in practice (±SD) was 14 (±7.4). The majority identified as women (19/26; 73%) and white/Caucasian (20/26; 78%). Participants were from 9 different communities with over half (n=15) being from a medium sized urban population centre as defined by Statistics Canada . Further details of participant characteristics are provided in Table 2. Demographic questions were open ended and so responses to questions vary (e.g., race/ethnicity identity).
Results of the Thematic Analysis
The themes and sub-themes are discussed in detail below and outlined in Figure 2 in relation to the Social Ecological Model.
Theme 1. Context of the Environment
Participants discussed the impact that the ED and hospital contexts have on young people’s transitions from ED to IYS, with a focus on staff schedules, hours of operation, wait times, and the physical environment.
1.1 Environment of the Emergency Department and Hospital
Within the ED, participants discussed that time played a significant role in the experience of a young person presenting with MHSU concerns. This was in regard to the timing of MHSU designated staff shifts in the ED, the amount of time waiting and how it was spent while waiting in the ED to be assessed, admitted or discharged. Participants expressed concern for how long a young person waits in the ED when they are in a crisis and presenting in distress. For instance, participants spoke of this experience taking up twelve hours or days, and that health status may significantly change in this time. Participants acknowledged that the wait times varied based on available staff in the ED and demand at time of presentation. They also suggested improving the wait time experience by providing care packages to increase comfort while young people wait, with items such as a water bottle, a snack, a blanket, and an activity to do. Figure 3 provides a vignette of the perspective of a parent waiting in the ED for their child to receive care. Another participant shared their experience:
“In the ER is it’s still a lot of time before someone really sits down and runs you through an assessment like that and for some of the youth that I have supported in going to the ER that length of time means that they’re actually fine now so they kind of get stuck in a system where they’re like people still want to talk to them and don’t really want to let them go but at this point like no one has talked to them for 12 hours so what’s the point in being there anymore.”
IYS staff, Participant #4
Another participant expressed a similar concern and said, “There’s often long wait periods, historically I’ve experienced with young people where they’ve been left in ER hallways for hours and sometimes days.” (Early Intervention Assertive Case Manager, Participant #15).
In addition to wait times, participants spoke of the timing of staff shifts in the ED, which could hinder or enhance a young person’s experience. For example, when young people present to the ED “after hours” there are usually less staff, resulting in higher wait times. Participants also spoke of specialized MHSU staff in the ED, including child psychiatrists and registered nurses with an addiction or mental health specialty. Although these service providers were seen to enhance care, participants noted that their hours of work were limited (e.g., Monday-Friday during the daytime) and so weren’t always available when needed. These aspects of time and resources (wait times and staff shifts) were considered at the organization level of the SEM. A parent highlighted this issue:
“The really big problem is that often he [young person] would go to the Emergency Department at the end of the week and then these, the addiction team isn’t available on the weekends or the evenings so instead of keeping him over the weekend so he could see someone, they just discharged him onto the street, like he can’t stay with us because of his issues and because of my daughter so he just goes back onto the street, it’s pretty sad.”
Parent, Participant #17
Another participant acknowledged the limited resources in the ED and their experience:
“When I was a young person my experience in the ER was a life changing one for me but had more to do with the other lived experience in the ER than it did for any of the staff that were there. I think I could really tell that the staff were super burnt out, like they didn’t have the resources that they want and that kind of left them not able to listen or hear the stories of people who were there with them but for me the like being able to connect with other people who have lived experience that was there really life changing thing.”
IYS Staff, Participant #4
Participants also spoke about the physical environment of hospital EDs and the impact this could have on young people. Within the ED, participants expressed concern over poor lighting, lack of private spaces or rooms while waiting, and congestion of people making it “quite loud and busy” (Early Intervention Assertive Case Manager, Participant 15). These were considered organization level factors of the SEM. Participants also discussed that there are a limited number of beds within the ED and for admission to a certain ward (psychiatric wards and pediatric wards were discussed). In addition, depending on age or certain MHSU needs, admission to either of these units may be inappropriate. Participants also spoke of a lack of youth-oriented substance use treatments available (e.g. detox beds, pharmacological and psychosocial treatments) in a hospital and in the community. Bed shortages and units/wards were considered policy level factors of the SEM. One participant discussed both the environment in the ED and admission to a unit:
“You’ve got multiple nurses coming and going in the next thing you know security guards are coming in and all kinds of stuff so you know you’re just kind of whatever you’re just sort of pushed off to the side, they don’t have the capacity to deal with it and it’s not a nice patient to deal with right?
…By the time they stabilized, they’re ready to get out of there because they are in a pediatrics unit so it’s already odd because you know they’re next to a child who may have a broken leg or you know a baby that’s in there for a broken arm, it’s a mixed bag. There really isn’t any place for them”.
IYS Leadership, Participant #23
1.2 Environment of Integrated Youth Services
Participants were concerned regarding the hours of IYS availability and access to specialists (such as a psychiatrist). Generally, community IYS are open from 8:30am-4:30pm on weekdays; if a young person is discharged from the ED at any other time, they are left to initiate IYS contact themselves. These were considered community level factors of the SEM. One participant discussed the repercussions of the limited IYS hours and connection to ED discharges:
“This young person just showed up and we told them to come to Foundry, if there had been more ongoing care then there might be some discharge planning and some connections that are available and built but kind of quite often young people and their families are just left to navigate that in some ways on their own… you know I know it’s more challenging that we’re [IYS] kind of a Monday-Friday 9-5 industry and they’re a 24-hours a day, 7 days a week kind of industry, right? So how do we do that on a Saturday evening after a young person has overdosed or maybe showed up because you know they’re at risk of harm…
This really came up for us over the last year and a half, we’ve had, we had sort of a period of you know 3 young people who had died by suicide and then within a couple months another couple people you know just really realizing that you know sort of those bigger players that interact with young people like mental health and substance use services, education services and others really don’t know what’s happening on the weekends, right?”
IYS Leadership, Participant #7
Theme 2. Assessments
Participants that worked in the ED spoke of not knowing how to assess for MHSU concerns and using MHSU-related assessments, especially for young people. Standardized scoring systems and needing to get a certain score to show a level of crisis through reported symptoms were also discussed. Lastly, participants discussed current assessments used and recommendations for improvement. All factors about assessments in the ED were considered the organizational level of the SEM.
2.1 Not for Young People
Participants were unclear with regard to youth-appropriate ED assessments and resources and described a lack of confidence and knowledge when assessing or referring young people with MHSU challenges. In response to being asked about assessments a physician responded:
“Well there are certainly different scoring systems that we use, scoring system that we use for alcohol intoxication, COWS [The Clinical Opiate Withdrawal Scale] is a scoring system that we’ll use for alcohol overdose or opioid withdrawal symptoms. I know that there are several agitation scores that do exist, we don’t often or certainly I don’t use those I don’t have a numeric scoring system that I use for agitation but I do know those exist. I don’t think there are any specific scoring systems for mental health issues or formalized assessments systems.”
Interviewer “How comfortable are physicians saying stay/go for young people with mental health issues?”
“I would say uncomfortable.”
Interviewer “How often do you think the physicians make the decisions themselves?”
“I would say often enough because we see such a high volume of substance abuse and addictions or mental health excuse me that we can’t refer everyone to psychiatry so we sort of have a process where we definitely will refer who we think are higher risk and the younger the person the more likely we are to refer and the comfort level is lower with younger patients.”
ED Physician, Participant #24
2.2 That Magical Number
Participants also spoke about young people knowing that when they were screened or assessed as a patient in the ED that a certain score or cut-off point was needed to either be admitted or get referred to services. They explained that they would use this knowledge to downplay symptoms if they wanted to go home, or on the other hand identify symptoms they knew would get them help. One participant explained their experience with this:
“People kind of knew that the ER was assessing you and so there became this idea that people, if you want help then you have to make yourself look as bad as possible and make yourself show as many symptoms as possible so that you would meet that magical number. I think whatever assessment people are gonna use the 5 or 10 points before you hit that magical number or even that magical range also suck… I know that every assessment has young people who don’t think it’s that hard to fill out and there are people who fucking hate it so it’s kind of hard to pick one in particular but for me it’s more just what we do before what we do with the people who don’t meet the criteria and how we can give them better resources ‘cause they’re clearly also not doing well, no one wants to waste their evening in a hospital.”
IYS staff, Participant #4
Physicians in the ED corroborated this, explaining that assessments and screening are used to determine if a young person is in crisis and the level of severity to determine if they should see a mental health specialist (such as a psychiatrist) for an evaluation. A physician explained this process from their perspective:
“I’d say at least two-thirds of the kids we see actually do not require an emergent psychiatric assessment and in fact just needs some directions as to what the situation is, get some perspective on where, what kind of resources exist for their needs and then I talk to them about the various resources and the way I talk about three tiers, like the highest tier is the most emergent they need to see a psychiatrist really for the perspective of hospitalizing them, to keep them safe and stabilize until we can connect them to community resources. The second tier is when I will put in place a crisis response team and crisis type management whereby a psychiatrist or a mental health team provider will contact them the next day or so to see what the situation is and help them navigate the healthcare system and the mental health resources.”
ED Physician, Participant #9
2.3 The Many Aspects of Health
Participants identified specific assessments used in the ED (see Table 4 for further details) and acknowledged that ED assessments were inconsistent, especially regarding substance use. They encouraged recognizing factors beyond self-harm risk and incorporating a holistic approach to consider mental, physical, and sexual health, substance use, social determinants of health (such as housing and social supports) and culture. A parent shared her story of her experience with her child in the ED with regards to assessments, as well as recommendations for improvement:
“I keep coming back to a substance use assessment done by a trained and experienced professional… A medical professional suggesting that a parent take a youth home who is high, drunk, suffering from suicidal ideation, taking prescription medication, soon to be coming down off their high – this is highly dangerous in my mind and experience. If the medical professionals and the parent have no clear idea of what they are trying to support or possibly will need to manage than how can anything other than having the youth stay in hospital where potential necessary treatment is immediately available even be considered, let alone suggested…
A substance use assessment may include questions and observations related to identifying where challenges are existing and how problematic these challenges are. These areas may include but are not limited to family life, social experiences, school/work life, mental health state, changes in behaviour, appearance, coordination (walking, sitting, writing), acute and chronic memory issues, red or glazed eyes, dilated or constricted pupils, unusual body odors, tremors, under-weight, low energy, bruising, dehydrated, dizzy, sleep related issues, etc.”
Parent, Participant #26
Theme 3. Inadequate Communication
Participants emphasized young people having to repeat painful or traumatic histories to multiple care providers and having providers deliver inconsistent or incorrect information when referring to other services. All communication between a young person and another person was considered at the interpersonal level of the SEM. In addition, communication between various services (different charting systems and medical records) made it a challenge for continuity of care for young people. The inconsistency and inability of charting systems to communicate across the province was considered a policy level factor.
3.1 Person to Person
The direct communication between health care providers and young people had a significant impact on a young person seeking help. A recurring concept discussed was that when youth present to an ED with a MHSU concern, they are in a very vulnerable state where they want or need help. They are then asked to repeat their story numerous times to each care provider throughout this process, which can be a difficult and traumatic experience. A participant expressed their frustration with young people having to repeat stories:
“If at all possible if folks could read the story, rather than having a young person repeat it over and over and over again so there is sort of this description where you come in, go through intake, you tell your story, you see the nurse, you tell your story, you see somebody else a liaison or anybody else, you tell your story, you see the doctor, you tell your story, if you get to a specialist, you tell your story, so there’s testimony is telling stories you know like 5, sometimes 6 times to different individuals along the way which was really exhausting and problematic.”
Family Services Project Developer, Participant 22
In addition to repeating stories to different people, participants cited negative experiences when young people were not treated as a person first during conversations with care providers. This left youth in the ED feeling invalidated, unsafe, and stigmatized during an already traumatic experience. Participants acknowledged the importance of the communication with health care providers, as one negative experience can keep a youth from seeking out help again in the future. A participant shared their experience:
“I went in [to the ED] and I was sharing the bit, struggling with eating disorder and I had someone respond “so you just want to be skinny, that’s your issue”?... it just felt icky to me or I’ve had times where my lab work was very off and I had a nurse say to me “don’t you realize you’re killing yourself here, like this is very serious, do you not see how serious this is”? And again it wasn’t in a compassionate light, I’ve had friends who had struggled more with I think like bulimia and when they opened up about their binging/purging there was this kind of horrified look on the physician’s face and they shared with me how they just felt so embarrassed that they even admitted to what they were doing. I think sometimes we hope as people who’ve struggled when we share these things be met with this empathy and understanding”.
Peer Support Worker, Participant #4
A parent also shared their experience with a child in the ED and the “lack of trauma-informed care”. She summarized her experience and compared the difficulties of mental health compared to physical health:
“So, in general the experience of the process of acquiring support through the ED is quite stressful, unsupportive, difficult to navigate and not all validating. It is not as simple as going in and saying you need medical assistance and then being supportively brought through the appropriate steps of care, the way which you would if you went in for a broken limb or a high fever with severe nausea and emesis.”
Parent, Participant #26
Participants also spoke about miscommunication regarding referrals from the ED to community IYS based on personal conversations of what they were told in the ED. This then led to unrealistic expectations upon referral with regard to wait times for services and what services are offered. A participant discussed the miscommunication about referral to other services:
“So I think for me it’s less the assessment and more like really encouraging people to do to like give those like good resources and not be lazy about it, I think there sometimes people who will give out a resource but they don’t know anything about how to access that resource, they don’t know if that resource has space the number of young people. I know [people] who’ve gotten a resource from the ER after being told they weren’t going to get a bed for that night and then they call that place and there’s a 3-year waiting list.”
IYS staff, Participant #4
Participants also spoke about receiving pamphlets as a referral with no explanation beyond this which was not helpful communication. A parent summarized their experience:
“We just get pamphlets and the pamphlets aren’t helpful… For my son, when he’s discharged, he’s handed from PED [pediatrics] he’s handed a bunch of pamphlets maybe a packet of pills that he just gobbles down, he’s feeling rather hopeless, helpless, he’s given a bunch of numbers to call, if that, which he doesn’t, he’s not able to he’s just not able to, he had gone there for help but yeah wasn’t able to get any.”
Parent, Participant #17
3.2 Service to Service
Participants identified communication when transitioning between services to be suboptimal, as there is a lack of communication between charting systems in different agencies (even within the same province). This again led to repetition of young people’s stories (as discussed above in ‘Person to Person’ communication). Participants acknowledged the need for continuity of care through improved charting systems and referrals. A physician shared this from their perspective:
“It’s just a hope you say ‘go to Foundry!’ But no part of their chart, nothing follows them to there so they can go to the Foundry and Foundry may have no idea that they’ve even been to the emergency department or what their concerns were at the time or why they’re even showing up.”
ED Physician, Participant #1
Another health care provider discussed the difficulty with systems communicating and highlighted this, “continuative care just gets totally dropped, the only way it survives is if we’re all on the same medical record so that’s something that kind of keeps that continuative care alive” (Social Worker, Participant #5).