BACKGROUND AND INTRODUCTION
Reports of morbidity and mortality from opioid use have increased significantly since 2016 when federal health authorities in Canada began routinely reporting on the upward trend in apparent opioid toxicity deaths (ie, accidental “overdose” or drug poisoning). As of March 2021, there were close to 23,000 such deaths recorded across the country in just over 5 years.1 An increasingly toxic drug supply co-occurring with the COVID-19 pandemic have contributed to the worsening of the overdose death crisis in Canada, with deaths rising 88% in 2020 over the previous year. Data collected for 2021 shows that there are 20 deaths and 16 hospitalizations associated with opioid poisonings in Canada each day.1 A 2016 report from the Canadian Institute for Health Information showed hospitalizations due to opioid poisoning increased more for youth aged 15 to 24 than for any other age group; by 62% from 6.5 to more than 10 per 100,000 population between 2007–2008 and 2014–2015.2 In 2021, data from British Columbia shows that drug poisoning was the leading cause of death among young people aged 19 to 39 years, responsible for 45 per cent of all deaths in this age group.3
While these statistics on opioid morbidity and mortality are cause for alarm, there are significant—and largely unaddressed—health and social impacts on affected loved ones and families. A recent Canadian survey on the psychosocial impacts of overdose in youth on parents showed an increase in mental health problems including elevated rates of depression, anxiety, and changes to physical health resulting from grief. Nearly half of the respondents reported feeling stigma or judged by peers after the death of their loved one.4
The qualitative literature on substance use and affected family members has been established for over three decades and has typically focused on themes relating to relationship dynamics, caregiving, “stress and coping,” and social support.5 There has been limited, previous qualitative research exploring how parents are affected by youth and young adult substance use and drug-related death6–8 and very little research specific to how families have been affected by the current opioid overdose death crisis.9,10 In Canada, qualitative studies have focused on how adolescent substance use impacts mothers,11,12 and on mothers’ experiences of community-based advocacy in the context of the current overdose death crisis.13–15 There has also been renewed interest in family engagement in opioid treatment and recovery programs as diagnosis of opioid use disorder and opioid-related deaths have increased among young people.16–18 Yet despite the “mounting empirical support that family members and loved ones play an integral role in the success and wellbeing of individuals’ engagement along the care continuum,” this group remains overlooked by the healthcare system (p. 339).16 To this end, we concur with the insights of family-centered researchers such as Ventura and Bagley who have argued that, “less recognized is the fact that family members of individuals with (substance use disorder) also comprise a high-risk group deserving of specialized health care in their own right” (p. 339).16
In this paper, we draw from interviews with family members living in western Canada who have been affected by substance use and overdose death. The aim of our research was to understand family experiences with healthcare and treatment services when supporting a young person using substances. Our qualitative analysis draws attention to family experiences in seeking care for a child or loved one, as well as how family members identify the need for mental health and social supports for themselves. We conclude by briefly discussing how programs and providers can better meet the needs of affected families, under the umbrella of a more family-focused approach to care.
METHODOLOGY
Study design and approach
This study was situated within a national project carried out by the Emerging Health Threat Implementation Science Program on Opioid Interventions and Services, from the Canadian Research Initiative on Substance Misuse (CRISM), with a focus on mapping the landscape of prevention and treatment for youth who are new or “at risk” users of opioids.19 The project was funded by a subcontract from CRISM to the senior author, from the CIHR/Health Canada “Emerging Health Threat Implementation Science Program on Opioid Interventions and Services,” grant program. The national CRISM project included in-depth engagement with youth from five geographic sites across Canada, as described in detail elsewhere in this special issue.20 Based on local partnership capacity and research expertise, the CRISM Prairie Node covering the provinces of Manitoba, Saskatchewan, and Alberta carried out a qualitative interview project to engage the perspectives of parents and family members of youth and young adults who had sought treatment for opioids and/or who had died from overdose related to opioid use. Distinct from the other CRISM nodes profiled in this issue, we did not carry out focus groups with affected youth, but instead focused on one-to-one interviews with family members.
The methodological approach and study design was qualitative and exploratory. While the contributions of qualitative research for understanding substance use and drug treatment as complex social phenomena is not new, it remains somewhat peripheral to research in addiction medicine.21,22 Our study is anchored in a critical, postpositivist paradigm in health research which values rigorous observation and subjectivity of qualitative research, recognizing that the research process is not neutral, because “…the ways a researcher poses questions, designs studies, and interprets findings can be influenced by prior knowledge, values, and beliefs” (p. 696).23 To this end, participant narratives (interview data) do not represent essential truths, understanding that people who engage in interviews share only the parts of their private stories and experiences that are comfortable sharing publicly, and that interview data are co-constructed in the interactions between the researcher and interviewee.24,25 While qualitative research emphasizes authentic accounts of lived experiences, for a highly stigmatized topic like substance use, broader cultural and social views on drugs and addiction influence how stories are shared and framed in interviews (ie, what can be said, and what is left unsaid by participants).26,27
Recruitment and procedures
Our study followed the CRISM youth engagement summit, as described elsewhere in this special issue.20 The Alberta (Prairie Node) event was distinct from other nodes, because it included both youth who had experienced problems with opioid use and those who had experience supporting a friend or family member who was using opioids or who had died of overdose. Insights from the Alberta event (hosted in Calgary, Alberta) were used to inform the development of the qualitative interview guide. Additionally, questions and topics for the interview guide were generated through pilot consultation groups with youth and parents connected to a local youth advisory council with whom the authors are affiliated.
Participants were eligible for inclusion in the qualitative interview study if they had experience supporting a young person who had used opioids between the ages of 14 to 30. This age range was selected to mirror the broader CRISM project criteria (15–25), extending it to account young adult use in the late twenties to capture a longer period of use. Eligibility criteria included those whose children or loved ones had died of overdose or other substance-related causes (n = 6). Interviews were carried out in the spring and summer of 2020, with participants recruited chiefly by convenience sampling, of people attached to local parent support and advocacy networks (12 people), including a few that were affiliated with the CRISM Prairie Node. In addition to social media posts and study promotion through research email lists (3 people), snowball sampling was employed (2 people). Due to COVID-19 research protocols, interviews took place virtually by video call and by telephone, based on participants’ preferences. The interviews lasted between 30 and 90 minutes, and many lasted more than an hour (9/17 interviews). There was no discernable difference in the quality of the interviews carried out by phone as compared to those by video, although for the latter, some participants preferred not to be “on camera,” for the discussion. The interviews consisted of a series of open-ended questions about the experience of supporting a youth or young adult, and the family member or “support person's” experiences in accessing support for their own mental health. Interviews were transcribed from digital audio and transcripts were then anonymized to protect confidentiality. Participants were offered an honorarium ($50) in recognition of their time, and a copy of the interview transcript was provided to them for their records, as specified by our study consent procedures. The study was approved by the Conjoint Health Research Ethics Board of the University of Calgary (REB19-0142).
Analysis procedures
Analysis of interview data was guided by the six-step process offered by Braun and Clarke's approach to reflexive thematic analysis.28,29 Our approach to coding and analysis was both inductive and deductive. An initial coding framework was developed deductively, informed by the CRISM project's research questions, and in collaboration with the project team across nodes. As these codes were intended to code focus group data collection with youth carried out in other CRISM nodes, we then adapted this framework to our node's focus on family experiences. Coding was carried out jointly by two authors (FK, RH-S). Coding was exhaustive so that codes covered all the interview text, but codes were not mutually exclusive (ie, segments of data could be coded at more than one code). Our final list of codes included nine codes and seven sub-codes (Table 1).
Table 1 -
Codes and Subcodes
| Code |
Sub-codes (if applicable) |
| 1. Barriers to Care- for substance use and mental health |
Knowledge of Services and NavigationPoor treatment by service providers |
| 2. Failed Solutions- i.e. what has been offered, but hasn’t worked out |
|
| 3. Positive Solutions- i.e. what has worked, even if temporarily |
|
| 4. Values- i.e. families describe values and needs |
Services they would like to see |
| 5. Mental Health |
Of the young person using substancesOf the parent or family member supporting |
| 6. Family Trauma |
Impact of substance use on the family's membersHow family trauma influenced substance use |
| 7. Polysubstance use |
|
| 8. Drug Use and Addiction Stigma |
|
| 9. Intersections of Substance Use- i.e. as shaped by other social struggles |
|
The themes included in this article were also developed inductively, drawing primarily from two codes: Barriers to Care and Mental Health (Family Member), with additional data analyses planned for subsequent manuscripts. The final analysis and interpretation of themes was reviewed by a co-author and parent with lived experience of overdose death (KP), to ensure our interpretations did not misrepresent the participants perspectives, that our language was non-stigmatizing, and that we considered additional possible interpretations that participants may have been uncomfortable sharing with researchers.
FINDINGS
We recruited and carried out interviews with 17 people who were living in Alberta (n = 13), and Saskatchewan or Manitoba (n = 4). All interviewees were people who identified as women, and most (n = 12) were mothers of young adults or adult children. The remainder of the sample was made up of other family and close relationships (eg, common-law partner, stepsibling, aunt, cousin). Participants ranged in age from 20 to 60, with a mean age of 47 years; only 5 were 40 years old or younger. In terms of ethnicity, 13 participants self-identified as white and 4 as Métis or Indigenous. Most people lived in urban or suburban areas (n = 11), with 6 people from rural communities. As we recruited largely from local networks of parent and family groups where participants are well known as advocates within their local communities, to protect confidentiality we are not providing additional participant background information, or specific details about their family member's age or nature of their substance use or deaths, other than use of opioids as an adolescent or young adult as a study inclusion criterion.
In the first theme below, our analysis highlights how participants described the experience of supporting a loved one and the lack of appropriate, inclusive, and non-stigmatizing healthcare services for their family members who use drugs. Following this, we briefly consider what interviewees told us about their ongoing, unmet need for instrumental and psychosocial supports specifically for families supporting a loved one or grieving their death.
Theme 1: Seeking care for a loved one using substances
The most prominent theme identified through the analysis of interviews was the challenges faced by family members in learning how to support their loved one in accessing treatment for opioid and other substance use, and their subsequent difficulties in navigating a complex and disorganized array of services. For example, when family members first became aware of their loved one's need for help, there was no clear direction or pathway for accessing treatment. They further encountered waiting lists for services or heard that the care their loved one needed was simply unavailable in their region. Families described helplessness, frustration, and not knowing where to turn. For example, a parent described their disbelief when their daughter wanted to access a medical detoxification service that was a prerequisite for treatment, and none was available to them.
I said, are you sure like - this doesn’t make sense to me, there has to be somewhere, maybe you just didn’t make the right phone call? And (I) said, ok if I call around? And she's like…if you don’t believe me. I said it's not that I don’t believe you, I just can’t believe that there isn’t anywhere to go. And when I called around and when I was checking there was nowhere to go. And I was like, seriously? This is BS! And so, I started advocating for a detox center in [city]. (P06)
In addition to advocating for more services, due to the lack of guidance they had received, several participants shared that they subsequently took on the role in helping others navigate services,
…it's actually pretty much has been, I guess for lack of better term really a shit show, it really, nobody was of any help, we were the ones to be I guess the trail blazers for our community, as far as actually understanding what was happening, take that initiative, not just being, I guess shopping around through systems (for care). (P02)
Nobody offered me that information and where do I, where would I have learned that there's groups out there for parents whose kids are going through addiction where you can find out this information, so I’ve just passed along the information from my experience and that's all I can do. (P07)
Some of the challenges participants described were likely connected to the experience of seeking care during the onset of the current opioid poisoning crisis in Canada (ie, in and around 2016),29,30 when there was a comparative lack of awareness about problematic opioid use and the increased overdose risks associated with an illicit supply contaminated with fentanyl.29,31 Participants we spoke to described, for example, health care providers and addiction treatment not being aware of, or sharing with them, options for opioid agonist treatment, or their loved ones being discharged from hospital post-overdose without access to naloxone, and no information on supports provided to parents at the hospital when their child died.
While a lack of available care and not being able to access appropriate care when their loved one was ready for treatment is unfortunately not surprising given persistent, unmet need for youth substance use treatment in most areas of Canada,29,32,33 the stories shared by participants were complicated, desperate, and conveyed an overall sense of frustration and powerlessness among family members. Some participants did pinpoint experiences with individual providers or programs that were positive or helpful, but unfortunately these statements were rare across the data. Overall, the interviews highlighted negative experiences and did not speak to a coherent or inclusive “system” of care for addiction.
…certainly, (there) is the lack of evidence-based care that's out there for people, the lack of sources and resources for families to lean back on who are struggling with how to navigate a life of having someone growing up as a young person growing with a substance use disorder… the actual resources available to parents that are not just the evidence-based care available to our kids but evidence-based resources available to families that help to navigate. (P04)
…all the system did was keep him in crisis, I’m trying to get him out of crisis and all the system kept doing was keeping him in crisis, in crisis, in crisis. So you can’t get better when you’re in crisis all the time. (P01)
Although families shared their experiences with attempting to access a range of services (eg, detoxification, counseling, residential treatment), a prominent example of system dysfunction was shared in relation to service accessing post-hospitalization. Participants shared examples that spoke to a lack of communication and collaboration across services and frustration that additional, step-down care options were not available. Several participants shared that they experienced this when their loved one was accessing acute care in emergency departments and in the critical care unit following an overdose.
…when he had his first overdose it was a horrible, horrible experience from the ICU and all that. But I remember a social worker coming and we sat down, and we talked, and she made it sound like we were gonna get help. I think that was the problem? We spent time talking to doctors once my son came out of his coma. You know, he was interesting, he spent a lot of time talking to with the doctors, he built relationships with them, and I thought that would have carried on, but it didn’t. (P03)
In addition to confusion and poor communication about transitions in care and referral to either in-hospital or community resources, there were instances where families shared how they felt they were being treated poorly because of their loved one's substance use.
…so going into a hospital as a family you figure that the experts have the solutions and they know what to do and where to send you, and when you get attitude I’ve also learned that they really don’t know what to do with you, so part of the way they treat you is based on their own frustration of seeing this over and over and over again, and not having the proper resources in place to effectively treat their patient. (P04)
Yeah, it's very frustrating, the medical system, I find. But you know, I don’t know, I try to be understanding. They have a job to do, too. I get that, but it just feels like they’re pushing people, (pushing) them out, right? And it depends on what type of doctor you get, how much help you’re gonna get. Like if he really does care, or if he's just trying to push somebody through the system, right. (P08)
While some were generous in tempering their views with the understanding that providers faced challenges and frustration about the system's gaps and dysfunctions, other interviewees were far blunter in characterizing what they experienced as overt discrimination because of the stigma associated with addiction. One woman characterized her family's experiences of stigma as being in stark contrast to the support received for families with other medical problems,
I know because my sister's daughter is a diabetic, so she got diagnosed when she was two, oh my gosh, you know, all this support they got as a family, my dad has cancer, all of those, you know there's such a big difference on how families are treated and how the patient is treated, there's, there's no comparison. (P01)
Feeling judged or unsupported was not only experienced in hospital settings, as one parent described at length how they encountered “parent shaming,” from their primary care provider and a psychotherapist,
My husband and I went for counselling…and we were seeing a counsellor there because I had seen my family doctor, and his response was, you’re enabling him, that you’ve got to not support him, you don’t give him money, you don’t keep him in your house. He had a counsellor connected to his office who I really like and respect, but she was also saying, if it was my child, I wouldn’t let them in my house. That just didn’t resonate with me. I was thinking, but they didn’t know why for sure? I just knew as a mom you just can’t do that, like how is that (a) sign of love? (P05)
In stating that, “they didn’t know why for sure,” the participant questions the evidence supporting the idea of “enabling,” and the need to enact “tough love,” that are prominent in the advice offered to parents and other family members concerned about their loved one's substance use.
Shared here are experiences with treatment providers, but several participants also shared felt discrimination in interactions with law enforcement, especially when their loved one was arrested or charged and “bounced between” the justice system and the healthcare system because of illicit drug use. Many reiterated the fact that over the course of time, even with more experience in navigating the system and with different treatment options, their perception of the situation was that treatment options and access had not substantially improved. Similarly, for those who had experienced a loved one's death from overdose, they did not see significant improvements to what was provided for people using drugs and their families. Participants told us that they saw gaps in care across the continuum of care for addiction—including treatment, recovery, and harm reduction. The need for greater access to concurrent mental health services and trauma-informed care for addiction was also raised several times, as well as housing and employment supports for youth using drugs who may become more disenfranchised once leaving education and the family home.
Theme 2: Seeking care and support for their own needs
Even as family members may play an essential role in supporting a loved one's trajectory through substance use treatment and in accessing supports, their own need for support is unheeded by the healthcare system. Families of youth or young adults using opioids and other substances faced numerous challenges to their mental health and well-being and expressed the need for social and grief supports specific to the family experience of drug use and overdose death. Some found support in groups online and in their communities, while others were motivated to start their own support groups for families.
Yeah, you know…it's a great way in a sense I like to go in, and it's just sometimes just nice to get it off your chest what's happening and hear other people's stories and have input. Or they have input to your story. And like sometimes I get a little bit depressed. (P09)
(what is needed is for someone to say) You know what, these are self-care things that we find that, you know, could work well for both of you. These are things that been discovered. Like don’t just resend a textbook to me, but actually like do some knowledge and information sharing to make things better for people. (P02)
I’d say 80 percent of the support came from outside of the normal support system, for addictions any how, to find a good family addictions counsellor is tough. (P04)
Peer support groups can fill an important role, but the needs of families extend beyond what groups that are largely unfunded and volunteer-based can provide. In our relatively small sample, participants shared the impacts on the family, including strain on relationships with partners and marital or family separation, being overwhelmed with having to care for other children and family members, and financial strain associated with having to take time away from work to support their loved one, and from paying out of pocket for private addiction treatment. The experience of advocating for a loved one can also involve a great deal of time and energy. Some of those we interviewed took to challenging the treatment (or lack thereof) they had received in the system in formal ways. This included filing complaints against what they believed to be mistreatment of their loved one who had died of overdose, and others were navigating complicated custody and legal issues such as caring for their grandchildren, when their parent was deemed unable to do so by the courts.
It was clear from the interviews that family members have serious unmet mental health needs. In addition to seeking care for mental health conditions including anxiety and depression, people we interviewed also shared that they had planned or attempted suicide due to grief or the significant distress caused by their lack of support and social isolation. The desperation some experienced was encapsulated by experiences shared by more than one participant in our study, about being admitted to hospital care when seeking emergency care for their loved one.
I wait and wait and wait all week, and then I go (to the hospital) one day, and they go, “oh we’re discharging him,” and then I just lost it. I said, “you’re discharging him, I said he hasn’t even had a psychiatric evaluation, you haven’t done anything and so I have a total meltdown on the floor, like I’m having a meltdown, and at that time his father's there, we’re both screaming at everybody, you guys, and we even said that to them, we said if you guys release him he’ll be dead in six months, he’ll be dead so do you know what they did, they took me down to emergency and admitted me, oh, right un-fucking-believable. (P01)
Such instances where a parent accompanying their child to hospital also becomes a patient may be rare, but this speaks directly to the harm that the medical system causes when there is a failure to support families. Another especially poignant finding, was seen in a parent describing the lack of compassion or supports offered when their son died of overdose, and how this led them to provide what was missing for them to others.
The doctor comes in you know wants us to sit down. We don’t want to sit down, we’re upset. He sits down. It was just a horrible, horrible experience. And then the police called us to come into the room and they wanted us to identify [name of son]. And they didn’t even ask us, and then we said, well where we going? And we all stopped. We didn’t want to see our son, I didn’t want to see my son, I wanted to see him and remember him earlier that evening. So, so many things were done wrong and then we just left, we just walked out with no supports. So, another thing we did here in [province] was we made overdose loss supports that are now given out in hospitals, so they can give out this brochure so that these people connect with us, with [name of organization], online supports and in person supports. (P03)
While there are now more support groups for parents in Canadian communities, there are fewer supports for siblings, partners, and other family members as our participants noted. There is a need to recognize that grief, distress, and the persistent social stigma that continues to be associated with opioid use or overdose affects entire families, their social networks, and the larger community.
While our findings speak to how the system has failed to support families of people who use drugs, in a future paper we plan to explore solutions and opportunities for support in more depth. Although a less prominent theme in the data, interviewees did speak to rare instances of positive experiences, and we also asked explicitly about the types of approaches and supports they would like to see put in place for families and caregivers. At minimum, our systems of care could begin by being clearer to families about how to navigate the system, the limitations of what exists and how it can be accessed, and ultimately making sure people who use drugs, and their families are treated with respect, compassion, and non-judgment, as they would be for any other health condition.
DISCUSSION AND CONCLUSION
Our thematic analysis has described the experiences of affected family members when accessing healthcare and treatment for their loved one, and for themselves. The stigma encountered by people using substances when accessing healthcare, especially hospital care, has been well documented by researchers in Canada.34–36 Without detracting from the need to address how people who use drugs are “othered” and dehumanized in healthcare, our study widens the focus from the individual using substances to their family context, to suggest that we also need to address how stigma impacts the loved ones supporting the young person who uses opioids. Addiction stigma is not limited to the context of healthcare services, however, and is encountered from extended family, friends, and within the broader community.
As shared by our participants, families often experience what D’Aniello et al term the “dual strain” of taking on a caregiver role and encountering stigmatization.37 Relevant to the fact that our participants were only women and no men volunteered for this study, we know that mothers and other women in a central caregiving role, can be especially vulnerable to feelings of shame and self-blame, stemming from views of “poor” parenting as the root cause of substance use problems and gender roles within families.11,16 While the understanding that addiction is shaped by adverse childhood experiences has helped to advance trauma-informed models of care, complex, family-oriented approaches are required when working with adolescents and young adults. In their scoping review, Smith and Estefan describe this as the need to shift away from individually focused recovery models towards how “a more collectivist understanding looks at the interrelationships and complexities in family and addiction…under the umbrella of holistic, family systems therapeutic approaches” (p. 431).11 Yet as Adam and Kitt-Lewis note, family members are rarely considered or consulted as stakeholders in research on opioid misuse and the overdose, resulting in missed opportunities and a lack of novel interventions for patients and their families, even as “SUD is a complex problem and rarely faced alone by the person with SUD” (p. 475).10 With growing numbers of overdose deaths in Canada there has been greater attention to including the “family voice” in policy consultations and public forums in many jurisdictions, but it still remains unclear as to how this has translated into improvements downstream, at the point of care. Therefore, it is critical that when families are invited to the consultations that they are included in meaningful ways and that they are clear about the processes and results of their participation, as even our well-intended efforts in patient-oriented care can be experienced as tokenistic and exploitative.38
Moving beyond principles to clinical practice, what are the implications of this study, for better supporting families whose loved ones are seeking substance use and addiction treatment? Most importantly, this should involve including parents and family members in a formal capacity to provide peer support in areas including system navigation, psychosocial support for family members’ mental health bereavement needs, as well as ongoing community connection outside of hospital and clinic settings. As was highlighted by our findings, because it was exceptionally difficult for participants to find appropriate psychosocial supports in their communities, some formed their own peer support and advocacy groups. While valuable, these supports are largely unfunded and outside the healthcare system and formal referral processes, relying chiefly on the altruism of affected family members in volunteering their time, energy, and resources to fill critical gaps within the system.
Beyond talk of ending stigma or being inclusive, providing tangible supports and actionable strategies is critical, as family members are often essential supports when a youth or young adult is seeking care for their substance use. Yet as illustrated by participant 05 in the context of the first theme, parents receive advice that is unhelpful and at odds with their values. For example, advising loved ones to withdraw support (eg, “stop enabling”) or to shut a young person out (eg, “practice tough love”) may have the opposite of their intended effects in terms of diminishing trust and secure attachment between the young person and their family. This tension is evident in current discussions in Canada about the effectiveness and ethical implications of involuntary treatment or “secure care” for treating youth substance use.39–41 Although endorsed by some parent advocates and clinicians, critics argue coercive treatment for addiction can be associated with harms—in terms of increased overdose risk at discharge, irreparable harm to the youth–parent relationship (ie, mistrust, loss of autonomy) and destabilization that can lead to increased use and risk.39
It is also important to note that this paper largely addresses the needs of women family members, particularly mothers. Future research should prioritize and consider the needs of different family members, and address the perspectives of fathers, siblings, and grandparents when designing peer supports or bereavement services. Critically, as no men volunteered for this study, research approaches that challenge normative and socially embedded understandings of masculinity, addiction, and mental health42 may be helpful—both for engaging men and for understanding how gendered relational norms inform the dynamics of family caregiving and help-seeking in the context of youth substance use.
In addition to gender, there are potential limitations of this study, as well as our sampling and subsequent analysis. As our recruitment relied on convenience sampling, we primarily recruited individuals from support and advocacy groups who are favorable to substance use treatment and drug policy reform, and several who had experienced their child's overdose death. While we believe insights from our qualitative interpretations are transferable to other Canadian contexts impacted by the overdose and drug poisoning crisis, we acknowledge that different interpretations might have resulted had we recruited participants and families via other means, including those whose loved ones were still living and/or were in long term recovery. Another notable limitation of our sample is that we only spoke to participants who took an active role in their family members’ care and treatment for substance use. There may be different perspectives expressed by families who were less involved due to personal or family constraints, or even estranged because of challenging circumstances surrounding a loved one's substance use. This speaks to the need for a broad and inclusive approach to how we define family-focused research and practice, ideally with the person using substances defining who they view as their primary, family support person (ie, beyond legal definitions of family or kin). Additionally, our sample did not include fathers, who might offer different perspectives than those of mothers, but who are generally absent from research on addiction and family impacts.
Qualitative methodology remains subject to critiques from a positivist research paradigm that views its interpretations as holding limited validity and as potentially “biased,” by the perspectives of the researchers and analysts involved. To pre-empt such criticism and aligned with our use of Braun and Clarke's (2019)29 and their emphasis on reflexivity and subjective, situated accounts in thematic analysis, we offer the following statements about how our experiences have potentially shaped our approach to this study and our interpretations of the data: three members of the team have experience with supporting a family member who has used substances, two have experienced a close family member's overdose death. All authors have worked closely with youth and with affected or bereaved families in volunteer, clinical, or research capacities, and we view this as strength in terms of how this informs our interpretations of the data.
To close, we wish to be clear that our intent is not to indict healthcare providers. Rather, we argue for the importance of recognizing how families are shortchanged by systemic failures and the persistent stigma of addiction. By pointing to the need for more family-focused and inclusive supports, our aim is to lay the groundwork for improving care and to propose solutions to the persistent problem of stigma that is encountered by young people and their families when seeking treatment for opioid use. Certainly, scholarship on family-centered models of care, and “caregiving for the caregivers,” has a longstanding history within pediatric medicine and childhood disability research.43–45 It is also important to recognize that for families, encounters with stigma in health care are also not limited to addiction, but may intersect with other social inequities, as demonstrated by other qualitative research from our team with racialized immigrant fathers who have experienced child death.46 Therefore, in arguing for more attention to affected family members in responding to addiction, we need to tread cautiously, both to avoid “reinventing the wheel” and duplicating previous work, while also recognizing the unique circumstances and forms of social stigma that families affected by substance use and overdose death endure.
ACKNOWLEDGMENTS
We wish to express our deepest gratitude to the people who took the time to be interviewed and share their stories with us. The Youth Addiction Mental Health Provincial Advisory Council, Alberta Health Services, and the Canadian Centre on Substance Use and Addiction's Improving Treatment Together project were also generous and supportive allies for this project, providing time and advice that helped facilitate this study and the broader CRISM youth project in Alberta.
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