All participants either had a history of engagement or were currently engaged in services for illicit/non-medical drug use. Level of engagement and services used varied across participants based on demographic factors as well as personal experiences, trajectories, and goals in regards to substance use. When examining services ‘needed’, participants provided concrete suggestions and recommendations towards scaling up and implementing necessary substance use services and supports. These needs have been categorized below under the following subheadings: Address Stigmatization; Address System Fragmentation; Increase Service Provision and Capacity; and Scale-Up Specific Services and Supports such as Harm Reduction Services, Counseling, Treatment, and Housing.
Address stigmatization
One of the key issues participants discussed was the ways in which stigmatization affected whether or not they would seek treatment, and whether they found support beneficial or not. Many participants discussed experiencing different forms of stigmatization – including social stigmatization, structural stigmatization, and self-stigmatization – for their substance use:
“There is a shame attached to the stigma of being an addict and asking for help.” (Participant 04; 44-year-old man)
Participants often indicated that they had experienced structural stigmatization via judgmental staff members at different service organizations, and provided a variety of negative experiences, many of which discouraged them from seeking further help. Others discussed social stigma and reported being embarrassed or ashamed to seek help, explaining how no one in their community was willing to openly discuss substance use and related issues. This lack of open discussion contributed to feelings of internalized stigma, which in turn led participants to hide their substance use from their friends and families, and in some cases, use in riskier ways.
As such, participants discussed a distinct need to address and ‘break down’ stigma. Suggestions included ensuring services employed empathetic and caring staff who offered non-judgmental support, as well as conducting more research into understanding how stigma can affect people. Additionally, disseminating knowledge on the complexities of substance use, and how stigma may perpetuate PWUD’ unmet service needs were suggested, including specifically educating medical and front-line professionals who work with PWUD on this topic:
“I feel like especially [among] medical professionals, there’s a huge stigma and neon sign put on your forehead if you say you’re an addict. You’re treated a certain way and it’s not okay. If you’re in there and you want help, I think that there shouldn’t be judgement. There’s a lot of information about addiction that’s not in their curriculum, it’s just not something that they learned, so there’s a judgment placed.” (Participant 38; 30-year-old woman)
Address system fragmentation
Beyond stigmatization, participants commonly detailed accounts of major gaps in service delivery, including a glaring lack of service coordination, and discussed the general fragmented nature of Ontario’s substance use service system. Many participants indicated that transitions between services were not seamless, which was especially problematic. Examples included a lack of referral or being referred to the wrong or unhelpful service, a lack of follow-up, and having to go to multiple different services to find assistance:
“Especially when it comes to opiates, they need everything to happen seamlessly. It’s just one referral system to another and people get lost in the system.” (Participant 12; 33-year-old woman)
This issue was particularly apparent for the linkage between detoxification and residential treatment. Participants explained that once admitted into detox, they could only stay a limited amount of time, after which they were expected to transition into residential treatment. However, capacity issues often precluded them from direct admittance into residential treatment. This resulted in participants being released from detox and often returning to substance-conducive living situations, which led to feelings of discouragement, fear, and frustration. On many occasions, they would relapse and have to start the entire process over again:
“I had gotten into a couple detoxes, and then I was trying to get into rehabs, but it made no sense because once I went to detox I had to wait months sometimes to get into [treatment].” (Participant 13; 35-year-old man)
Other illustrations included limitations on the number of days allowed at certain services, ageing-out of services (i.e., young adults being forced to transition out of treatment due to their age), or having to undergo a period of detoxification before being allowed to enter treatment, which often left participants in a treatment void and were considered major hurdles to accessing support. As such, many participants felt there was a need to address what they considered was a ‘broken’ system, and the common experience of 'falling through the cracks' of the service system. Suggestions to remedy this issue included improving service coordination by enabling seamless transitions between services. As an example, one participant suggested:
“I think, ideally, I guess just to make it seamless. It’s almost like you need something all in one. I had a friend who overdosed and died 6 months ago. He had to get to the detox, they sent him to the hospital … he had problems getting into detox and had to wait a week. So the whole process isn’t seamless. The system kind of fell through for him. There’s a fundamental hole in the system. It’s just one referral system to another and people get lost in the system.” (Participant 11; 37-year-old man)
Increase service provision and capacity
Other common needs that were conveyed related to aspirations for services to increase their ability and capacity to serve more people at a time, in a less administratively onerous and burdensome way. For instance, many participants described the need for detoxification services/withdrawal management to increase the number of beds available, and reduce the amount of time and energy required for admittance:
“They say call every hour [to get into detox]. I normally call every 30 minutes. Like I understand that there’s situations that other people are already there, but a lot of people use them as shelters too, right?” (Participant 28; 28-year-old man)
Additionally, capacity issues were common at detox and shelter locations, where many participants would use these services interchangeably when they could not secure a place to sleep. However, participants reported they often had difficulties being admitted to detox facilities due to stringent admission requirements, such as being acutely intoxicated:
“[The detox] was literally a place to sleep. The shelters were full and the detox wouldn’t take you unless you’re intoxicated, so I made sure I was intoxicated so I could stay somewhere overnight. When the shelters get too full, it’s kind of scary. I literally got turned down from a detox because I was sober. So I said here, wait a couple hours, I’ll be back.” (Participant 35; 33-year-old man)
Additionally, participants described numerous accounts of having to wait to receive support at virtually every service, which had a detrimental effect and led to overwhelming feelings of discouragement:
“Well of course there’s waiting lists, that’s a big issue. You know, sometimes people are waiting four to six months to get in somewhere.” (Participant 01; 63-year-old woman)
Participants explained that wait lists were a particular issue due to the fleeting nature of their motivation, and the subsequently time-sensitive window of opportunity to seek and accept support. As such, participants described the importance of being able to receive support immediately once they were ready and willing to seek it:
“Especially for getting into treatment centres and stuff, and when you need help right away. I feel like people are dying out there … people just need to get into a place where they can detox. They just need that date. I’ve known many people that have died … I OD’d before I went to treatment this time. You just never know, that week could make a difference.” (Participant 36; 33-year-old woman)
Further, participants expressed a need for an increase in hours of operation since many of the services they rely on have limited hours, rendering them non-conducive to participant’s lifestyles and schedules:
“[The harm reduction service] closes very early, I don’t like the hours there. If they could do evening hours, that would be great. That’s important. Yeah even from 6 to 8, or 9 even.” (Participant 24; 55-year-old woman)
Additionally, participants suggested that certain services (i.e., private for-profit counseling or residential treatment centres) were altogether unaffordable, which hindered their ability to reach their substance use goals:
“I wish I found like a rehab program that you didn’t have to pay 30 grand for. I was looking around for something like that before I got into the trouble and I didn’t have much luck, they were all pay-for.” (Participant 21; 28-year-old man)
Scale-up specific services and related supports
While the majority of participants felt supported by the services offered in their community, many indicated an overall lack of community-based services, as well as a lack of specific services tailored to meet their particular needs. This was particularly true for smaller or more rural communities. For example, one participant explained:
“In our community, there’s no detox, there’s no safe use site, no safe injection site, no rehab, there’s no inpatient treatment centre … there’s nowhere to go.” (Participant 02; 43-year-old woman)
Participants indicated that they either had to travel outside their community for certain services, or simply did not receive support. While a general lack of services was common for many participants and communities, there were concrete suggestions put forth by participants to scale-up harm reduction services, counseling, treatment, and housing.
“If there were even temporary safe injection sites at those locations in the city [with the biggest concentrations of overdoses], they would probably be better accessed and an immediate resource or help for people who are overdosing in that moment … Also, these Naloxone kits, I would be one to advocate that merchants in the downtown core all have access to those.” (Participant 04; 44-year-old man)
In particular, participants expressed that anonymous mobile needle distribution/outreach services were helpful because they provided safe supplies, collected used ones, and offered a range of additional health and social services which obviated many of the physical (e.g., accessibility) and psychological (e.g., stigma) barriers participants commonly encountered when accessing services:
“Needle exchange is really good because you can just call them you don’t have to give them your name, nothing, and just tell them where you are, anywhere, and they’ll come meet you … It’s mobile … They give you literally everything to keep it clean and safe, right? Because they don’t want people sharing needles, right? And so, it’s actually one really good thing.” (Participant 13; 35-year-old man)
Participants described the importance of anonymity and accessibility, and as such, suggested a need for low-barrier community and addiction-related drop-in centres that do not have burdensome application (e.g., paperwork) or administrative (e.g., identification) requirements. Participants recommended that these drop-in centers could assist people with a wide range of needs, and would be accessible due to being located in one centralized building or location. For instance, when asked about what services were needed in their community, one participant described:
“Drop-ins - where people can use the computers, get counseling, housing, the help you need.” (Participant 24; 55-year-old woman)
Another participant described a similar desire for access to a low-barrier comprehensive service design in their community, as based on their previous experience utilizing such a service when they lived in a larger city:
“There’s nothing else here. When I was in [city name] I was at the community centre a lot right?...There’s the safe injection site there, but then there’s also counselors, and doctors, and everybody there that you can talk to. It’s open from 8 in the morning to 8 at night … like a drop-in centre.” (Participant 08; 32-year-old man)
While participants provided examples of suggested supports that could be offered within low-barrier centralized services, emphasis was placed on the need for connections between detox and short- and long-term residential treatment that were free of cost:
“I think [service name] in [city name] offers medical detox in-house, and that has had a really good impact. You’re medically detoxed there, and then you go right into a 30 day program. But the problem is that it’s like 30 thousand dollars.” (Participant 11; 37-year-old man)
Participants further indicated that harm reduction services are a great place to initiate substance use support, particularly as they consider each person’s unique substance use goals when offering services:
“For someone who is starting, the idea of harm reduction is a good starting point … not only is relapse common, but it’s likely.” (Participant 33; 57-year-old man)
However, some participants indicated that they were personally not able to use substances in less harmful ways, and that their substance use was all-or-nothing, and they therefore required abstinence-based recovery supports and services:
“Yeah, so when I started to try and get clean I was doing the outpatient group … but it’s a harm reduction [based program], so it’s not necessarily like an abstinent program. After going to treatment I’m learning a lot more about addiction, like that that won’t work for me. I needed to stop.” (Participant 38; 30-year-old woman)
“When I go to my support group, there’s lots of drug users that are active and they’re asking and trying to get us to use. So it’s not really helpful because they’re supposed to be encouraging the recovery, not the active use.” (Participant 05; 30-year-old woman)
Participants further explained that trauma-informed counseling was the most beneficial and needed as it emphasized the role of traumatic experiences in shaping peoples’ substance use trajectories, and enabled participants to address the underlying issues that they felt had contributed to their substance use:
“[Counseling] is really helpful if you’ve got trauma from when you were a child. Like I’ve got trauma from when I was a child. They’re helping me to overcome that and deal with the problem. My counselor tells me if I keep that inside and don’t talk about it, it builds up and you’re gonna wanna use. For me, I find talking about it, I don’t want to use again.” (Participant 25; 26-year-old man)
Additionally, specific counselor characteristics were highly regarded as important determinants of participants’ motivation and willingness to engage in counseling sessions. Specifically, counselors who were caring, empathetic, non-judgmental and/or had their own lived experience with substance use (i.e. PWUD) were preferred and requested. PWUD counselors were often perceived as approachable, valued, and trustworthy counselors, mainly in comparison to counselors who were taught ‘by the book’ and did not have lived experience with addiction. Some participants therefore indicated that PWUD are best suited to assist clients due to their personal experience and ability to understand the client’s needs:
“My counselor used to be an addict 26 years ago, so she knows everything and she’s already been through what I’ve been through, and I find it’s very useful to me because I’m talking to somebody who’s already been through the exact same thing that I’ve been through.” (Participant 25; 26-year-old man)
Specific counseling formats suggested by participants included one-on-one as well as daily drop-in groups, as well as familial or grief counseling. Notably, in line with the harm reduction model, participants were clear that counselors (regardless of format or credentials), needed to actively listen to their needs and develop a functioning therapeutic relationship where they could work together towards reaching the participant’s unique substance use goals.
“Probably actually going to rehab itself. Well there was 19 days, or almost 3 weeks of a safe environment where you’re not gonna use. You don’t have to worry about work or stress. That set me up for the best success.” (Participant 11; 37-year-old man)
Participants expressed the importance and need for affordable (ideally free) long-term residential treatment programs that did not have pre-determined end-dates, which would provide participants with adequate time to heal, while providing the foundation needed to reach their substance use and other goals:
“There needs to be more money put into funding places that doesn’t [sic] have an end date right? You’re there to heal yourself. [Healing] doesn’t happen in 90 days, 60 days, 30 days. It’s something that you continue to work on. If the government could realize that and give a little bit more funding, you’re gonna fix a lot of addiction.” (Participant 32; 31-year-old man)
However, some participants expressed the benefits of aftercare/drop-in outpatient programs, and indicated that upon completion of a residential treatment program, they relied on these services to maintain sobriety and/or meet their substance use goals. Therefore, residential treatment was largely conceptualized as a requirement needed to build a strong foundation and to be able to be connected with outpatient care:
“The program I’m in now is [helpful] because I was able to go to a treatment centre first … after the treatment centre I was able to get right into this program, and it’s gonna be able to give me a foundation.” (Participant 36; 33-year-old woman)
Therefore, it was often the combination of both of these types of treatment that many participants suggested was beneficial and needed.
“A lot of people are going into sober living houses up in [city name] … we don’t have that … supportive living environments would absolutely be really beneficial.” (Participant 04; 44-year-old man)
Specifically, participants articulated a desire for housing at two distinct and crucial time points: 1) during the waiting period between detox and residential treatment, and 2) after the completion of residential treatment. To illustrate, one participant suggested:
“You know the detox will only house you for a few days and there’s one spot for safe beds. So maybe a dedicated place that has safe beds for people that want to get into a treatment centre, and they’ll keep you until your date where you leave to go to treatment. That would probably be really good.” (Participant 41; 37-year-old man)
In terms of the provision of post-treatment housing, many participants indicated the need for affordable recovery houses, and expressed that this was vital to ensuring that the healing process and ‘foundation’ built through treatment was not futile. For instance, when asked what services or supports they needed in their community, one participant explained:
“Recovery houses, transitional housing. Once people get out of treatment and they’re coming back to the city because that’s where they’re from, they’re right back in the same environment that they got out of. It’s just the same cycle again. We need to see more of those.” (Participant 04; 44-year-old man)
Participants also expressed the importance of providing transitional housing in terms of cost-effectiveness, and highlighted the futility of paying to send someone to treatment, and then losing that financial investment by not providing them with a safe place to live and maintain their goals afterwards.