We read the full text of 56 studies from the first search and 30 studies from the updated search. We then carried out a purposive sampling of 24 studies which we included in this review (Fig. 1). There were 17 studies in which the participants were patients (N = 326), nine in which the participants were healthcare providers (N = 345) and two that included the experiences of both patients and healthcare providers (N = 86). The studies were conducted in the USA (6), United Kingdom (5), Canada (5), Norway (3), Sweden (2), Belgium (1) and New Zealand (1).
Before describing our findings, we present a visual organization of findings according to Anderson’s model of healthcare utilization. Findings in red (or highlighted) in Fig. 2 are the super-imposed themes – rather than suggest expanding upon Anderson’s model, we believe super-imposing these themes highlights the utility of Anderson’s model as a backdrop for understanding how shame and stigma are expressed in and replicate contextual factors, individual factors, health behaviors, and outcomes. Through our analysis we identified contextual factors, individual factors, health behaviours and outcome which showed facilitators and barriers with both predisposing and enabling service utilization.
Our analysis resulted in six main themes. The themes and our confidence in each finding are presented in Table 2, with explanations of the assessments and an overview of the contributing number of studies with author and publication year.
Table 2
CERQual Qualitative Evidence Profile – overall assessment of confidence in findings
Finding
|
CERQual- assessment*
|
Explanation of assessment
|
Contributing studies
|
1. Stigma from people outside OMT was a barrier to seeking out and remaining in treatment.
|
High confidence
|
Methodological limitations: No or minor concerns. Coherens, relevance and the fit of the data:
Minor concerns.
|
15 studies
Bates 2021; Bishop 2019; De Maeyer 2011; Gordon 2011; Granerud 2015; Green 2014; Harris 2015; Hewell 2017; Korthuis 2010; Livingston 2018; Richert 2015; Silva 202, Tanner 2011; Toft 2013
|
2. Both patients and health personnel perceived that the OMT system contributed to further stigma.
|
High confidence
|
Methodological limitations: No or minor concerns. Coherens, relevance and the fit of the data:
Minor concerns.
|
17 studies
Bates 2021; Belseth 2016; Bishop 2019; De Maeyer 2011; Gordon 2011; Granerud 2015; Green 2014; Harris 2015; Hewell 2017; Korthuis 2010; Marchand 2020; Notley 2014; Notley 2015;; Silva 2021; Tanner 2011; Woo 2017; Yadav 2019
|
3. Inadequate knowledge and competence among the health personnel reduced the quality of OMT, and negatively affected the patients' experiences with the OMT services and treatment outcomes
|
Moderate confidence
|
Methodological limitations: Minor concerns.
Coherens and relevance: No or minor concerns.
The fit of the data: Moderate concerns.
|
12 studies
Bates 2021; Gordon 2011; Granerud 2015; Green 2014; Hewell 2017; Johnson 2014; Lachapelle 2021; Livingston 2018; Notley 2014;; Van Hout 2018; Woo 2017, Yadav 2019
|
4. Communication and patient-health personnel relationships were either facilitators or barriers for treatment compliance in OMT
|
High confidence
|
Methodological limitations: Minor concerns
Coherens, relevance and the fit of the data: No or minor concerns.
|
18 studies
Belseth 2016; Bishop 2019; De Maeyer 2011; Gordon 2011; Granerud 2015; Green 2014; Harris 2015; Hewell 2017; Korthuis 2010; Lachapelle 2021; Livingston 2018; Marchand 2020; Notley 2014; Notley 2015; Silva 2021; Tanner 2011; Toft 2013; Yadav 2019
|
5. Patients had many expectations related to non-medical treatment outcomes of OMT such as getting a job, finding housing and regaining their previous social relationships with friends and family.
|
Moderate confidence
|
Methodological limitations:
Moderate concerns. Coherens and the fit of the data: No or minor concerns. Relevance: Moderate concerns.
|
15 studies
Bishop 2019; De Maeyer 2011; Granerud 2015; Harris 2015; Hewell 2017; Korthuis 2010; Lachapelle 2021; Notley 2014; Notley 2015; Richert 2015; Silva 2021; Sohler 2013; Tanner 2011; Van Hout 2018; Yadav 2019
|
6. Patients continuously balanced positive expectations of OMT, and negative outcomes, especially those outcomes that were related to the stigma connected to OMT, their expectations of OMT and positive outcomes they hope to achieve.
|
Low confidence
|
Methodological limitations:
Moderate concerns. Coherens and the fit of the data and elevance: serious concerns
|
8 studies
Bates 2021; De Maeyer 2011; Harris 2015; Granerud 2015; Green 2014; Notley 2015; Silva 2021; Tanner 2011
|
* High confidence: it is highly likely that the review finding is a reasonable
Medium confidence: it is likely that the review finding is a reasonable
Low confidence: it is possible that the review finding is a reasonable
Very low confidence: it is not clear whether the review finding is a reasonable
|
See appendix for supplementary material |
Finding 1: Stigma from people outside OMT was a barrier to seek out and remain in treatment
Stigma appeared immediately as a contextual barrier, attitudes towards OMT in the social context surrounding the individual. Stigma among families, friends, and in society in general was a strong negative influence on the persons' decision to start OMT (Hewell et al., 2017; Richert & Johnson, 2015; Silva & Andersson, 2021; Toft, 2013). While many participants considered being in OMT as a better position than being outside OMT (Bishop et al., 2019; De Maeyer et al., 2011; Granerud & Toft, 2015; Harris, 2015; Korthuis et al., 2010; Toft, 2013), stigma reported by other participants made this not always the case. Stigma could also be a bridge between health perceptions in society and the individual's own health perceptions (Tanner et al., 2011).
This contextual barrier became an individual factor in the form of internalized stigma (Fig. 4). Some patients had internalized this external stigma in the form of shame (De Maeyer et al., 2011; Hewell et al., 2017; Richert & Johnson, 2015; Silva & Andersson, 2021). Beginning in OMT was a public declaration of one’s opioid use disorder. In some studies, therefore, people escaped or avoided the stigma of making this public declaration by not seeking treatment and keeping opioid use hidden. When they began in OMT, they were accepted the stigma conferred by it (Hewell et al., 2017; Richert & Johnson, 2015).
Stigma could also be a barrier for healthcare providers to provide OMT. One clear attitude was that healthcare providers viewed persons in OMT as difficult patients. Persons in OMT were expected to be demanding and to "scare away" other patients (Bates & Martin-Misener, 2022; Gordon et al., 2011; Harris, 2015; Livingston et al., 2018). Another stigmatizing attitude was that some healthcare providers outside the OMT system believed that OMT was not a treatment, but just a different type of addiction (Johnson & Richert, 2014). They were negatively tuned to OMT and believed it was the wrong approach to treat opioid addiction (Bates & Martin-Misener, 2022; Green et al., 2014). This attitude towards OMT led them to actively discourage or disrespect OMT as a treatment option.
Finding 2: OMT may contribute to an increased stigmatization process, according to both patients and healthcare providers
Stigma in finding 1 relates to factors that made it harder for patients to start in OMT, and harder for healthcare providers to work within OMT. Our second finding relates to stigma as an experience of OMT itself (Fig. 5). This should also be seen in the context of external factors as illustrated in Fig. 5. It wasn't just families, friends, and the community at large that saw OMT as something negative (Bishop et al., 2019; De Maeyer et al., 2011; Hewell et al., 2017; Woo et al., 2017). Employees at pharmacies, healthcare providers, and others who were part of the OMT system also stigmatized patients. Their beliefs were rooted in the societal perceptions of persons with opioid addiction and OMT (Bates & Martin-Misener, 2022). On the other hand, healthcare providers also had an influence on society's health perceptions (Gordon et al., 2011; Green et al., 2014; Harris, 2015; Yadav et al., 2019). When healthcare providers reflected these negative attitudes from the outside; patients expected the OMT program to stigmatize further (Granerud & Toft, 2015; Woo et al., 2017).The results suggest that OMT contributed to further stigma when recipients of treatment, according to both patients and healthcare providers, were treated as addicts and not as "ordinary" patients (Granerud & Toft, 2015; Silva & Andersson, 2021). Additionally, the social context and acceptance and perceived warmth displayed by healthcare providers were considered of great importance for treatment success (Marchand et al., 2020; Silva & Andersson, 2021).
In view of Andersen's model, stigma from the OMT system had a distinctly negative effect on how willing patients were to remain in OMT. In the end, the stigma was reproduced by the OMT system, which is an outcome beyond relationships between the patient and healthcare providers. Also, the way OMT was physically organized in some cases meant that patients felt more stigmatized, sometimes to an even greater extent than when they were outside OMT (Harris, 2015; Hewell et al., 2017; Korthuis et al., 2010; Notley et al., 2014).
For example, many patients rated patients receiving methadone lower than those receiving buprenorphine. They regarded patients on methadone as more "real abusers"(Bishop et al., 2019; De Maeyer et al., 2011; Harris, 2015; Tanner et al., 2011; Woo et al., 2017). They also felt it was more stigmatizing having to stand in a methadone line in the pharmacy, than picking up a normal prescription.
To summarize finding 1 and 2, stigma acts as a contextual and individual barrier at the beginning of treatment. Negative attitudes in society increase the threshold for patients to start in OMT, both because they want to avoid other people's prejudices, but also because many themselves have internalized this stigma. Patients' behaviour in OMT - treatment adherence, self-medication, and apostasy - can be understood as a continuous deliberation between the strain of stigma and positive experiences with OMT as illustrated in Fig. 9. Findings also show that the way OMT is organized can contribute to producing/ and reproducing stigma, and stigma was in this way also an outcome (Bates & Martin-Misener, 2022; Belseth, 2016; Notley et al., 2014).
Finding 3 Inadequate knowledge and expertise among healthcare providers
We identified a lack of knowledge and expertise among healthcare providers as contextual factors that influenced the quality and availability of OMT. Patients and healthcare providers reported that inadequate knowledge and expertise among healthcare providers were barriers, which affected access to OMT, the quality of treatment, patients' experiences, and treatment outcomes. They also reported that inadequate knowledge and expertise regarding the client population and treatment affected their ability to provide quality care (Bates & Martin-Misener, 2022; Granerud & Toft, 2015; Hewell et al., 2017; Johnson & Richert, 2014; Woo et al., 2017; Yadav et al., 2019). This may also have contributed to negative attitudes towards OMT patients and OMT among healthcare providers.
The need for adequate knowledge, access to experts, training and professional guidelines were highlighted by healthcare providers. They generally had inadequate knowledge of the various types of substitution treatments, local services and support schemes that existed. Several emphasized that nurses and doctors without sufficient experience with the patient population lacked the prerequisites to understand the mechanisms of the treatment (Gordon et al., 2011; Green et al., 2014; Lachapelle et al., 2021; Yadav et al., 2019). Among healthcare providers, few had learned about, or acquired skills about, substance abuse disorders in their formal education, unless they had actively sought this type of knowledge themselves. They saw a need to incorporate this type of treatment into the education or specialization of health personnel through day courses, or conferences and continuing education as professionals (Bates & Martin-Misener, 2022; Green et al., 2014; Van Hout et al., 2018). They also emphasized the need for interdisciplinary competence and collaboration across systems as patients also needed support in areas outside health service's domain (Bates & Martin-Misener, 2022; Livingston et al., 2018; Van Hout et al., 2018; Yadav et al., 2019).
Lack of knowledge may have contributed to negative attitudes towards the patient group and OMT among healthcare providers. Several healthcare providers described OMT patients as difficult and dishonest people with chaotic lifestyles. "Diversion of OMT drugs" and the use of other drugs in addition to treatment were also seen as a challenge (Livingston et al., 2018; Notley et al., 2015). Healthcare providers felt that offering OMT in their clinic could threaten the safety of other patients and employees (Bates & Martin-Misener, 2022; Livingston et al., 2018; Van Hout et al., 2018; Yadav et al., 2019). Several shared personal experiences and examples of how this uncertainty had influenced their professional decisions, and it was especially newly qualified doctors who wanted to avoid participating in the OMT system (Gordon et al., 2011; Van Hout et al., 2018; Yadav et al., 2019).
Finding 4 Communication between personnel and patients either facilitates or inhibits treatment compliance and positive outcomes
The relationship and communication between patient and healthcare providers affects the quality of treatment and treatment outcomes. Patients and healthcare providers perceived that communication and patient-provider relationships were crucial for the quality of the OMT and could be facilitators or barriers for treatment compliance and outcomes. Healthcare providers and patients identified that good communication and relationships could enable compliance, while poor communication and non-existent therapeutic relationships could negatively affect the’ experiences of OMT for both patients and providers, and hinder treatment compliance.
Patients and healthcare providers believed that therapeutic relationships and good communication contributed to more openness about challenges, more targeted treatment and better treatment compliance (Belseth, 2016; Bishop et al., 2019; Granerud & Toft, 2015; Hewell et al., 2017; Korthuis et al., 2010; Lachapelle et al., 2021; Marchand et al., 2020; Notley et al., 2015; Silva & Andersson, 2021; Tanner et al., 2011; Toft, 2013). The patients described that it was important to be met with respect by the therapists and that there was room for cooperation and openness about the treatment and problems that arose during the treatment (Granerud & Toft, 2015; Hewell et al., 2017; Korthuis et al., 2010; Marchand et al., 2020; Silva & Andersson, 2021; Tanner et al., 2011).
The patients wanted to be seen as a person and not as a drug addict (Granerud & Toft, 2015; Harris, 2015). They wanted to actively participate in developing treatment plans and wanted their views on medication and dose to be considered (Granerud & Toft, 2015; Hewell et al., 2017; Korthuis et al., 2010; Lachapelle et al., 2021; Marchand et al., 2020; Toft, 2013). They emphasized that it was important to be able to be open about difficulties in treatment or relapse with therapists without this resulting in "punishment" (Bishop et al., 2019; De Maeyer et al., 2011; Korthuis et al., 2010). Being prepared for and informed about what they could anticipate regarding the treatment was also highlighted as positive to be able to cope with challenges encountered during treatment (Bishop et al., 2019). Organizational and structural conditions of treatment also affected the interaction between patients and healthcare providers. The patients' encounters with therapists also represented organizational factors, i.e. parts of the treatment process itself, since they took place and were shaped by certain settings and treatment structures. Outpatient setting was seen by many as a safer and less stigmatized arena for meeting therapists than methadone centers and pharmacies (Harris, 2015; Korthuis et al., 2010). Here, many patients experienced being treated as "normal people" who received treatment and not "just" as one of the drug addicts. This setting gave more room to build relationship and trust with the therapists (Korthuis et al., 2010).
Many patients described that the therapist-patient relationship was characterized by an asymmetric power distribution. The therapists had power over their lives and some patients were afraid of how this power could be used (Granerud & Toft, 2015; Korthuis et al., 2010; Toft, 2013). The control schemes made the users feel trapped and were perceived as incapacitating (Granerud & Toft, 2015). They described that there was little room for error in the system and that the control systems and fear of sanctions contributed to a lack of transparency with therapists about problems and that relapses and problems were kept hidden (Bishop et al., 2019; De Maeyer et al., 2011; Granerud & Toft, 2015; Korthuis et al., 2010; Toft, 2013). This meant that some of the patients told as little as possible to staff due to fear that what they had said could be used against them (Granerud & Toft, 2015; Toft, 2013). They experienced that health personnel focused on the negative rather than on what went well (Granerud & Toft, 2015; Toft, 2013). This meant that patients adapted information that was provided to satisfy therapists instead of being open about challenges, which in turn contributed to insufficient help to cope with the actual problems. Several described that they were not heard by therapists, and they felt that they had no influence on their own treatment (Granerud & Toft, 2015; Toft, 2013). These negative encounters with the therapists affected the patients' perceptions of the health services, influenced the treatment, and could contribute to the patients not being able to complete the treatment.
Communication and relationships between patient and therapist were also a topic among providers. Healthcare providers pointed out that it was important to build relationships with their patients to make room for trust and openness in the treatment situation (Belseth, 2016; Notley et al., 2014; Yadav et al., 2019). They often experienced that it was difficult to talk about drug use with the patients as they had previous experiences with conflicts and broken relationships with health and social services and did not trust them or the system. This made the relational work challenging (Belseth, 2016). Stigmatizing attitudes among healthcare providers (findings 1 and 2) were also highlighted by healthcare providers as a barrier to relational work (Gordon et al., 2011; Green et al., 2014; Harris, 2015; Yadav et al., 2019). Therapists’ unconscious negative attitudes and in some cases fear, could affect the interaction with the patients negatively (Yadav et al., 2019). Some pointed out that the systems were not adapted for such relational work (Belseth, 2016 {Yadav, 2019 #27; Yadav et al., 2019). Healthcare providers also experienced that office-based settings were a better arena for relational work than methadone centers and pharmacies, as this setting was more adapted for individual follow-up (Green et al., 2014; Harris, 2015).
Finding 5 Patients' expectations of non-health related outcomes of the treatment
A consistent theme among patients was that OMT was much more than medical treatment, and the outcomes they expected were just as often social as health related. Patients portrayed their problems with substances as multifactorial including social, psychological and physical factors (Bishop et al., 2019; De Maeyer et al., 2011; Hewell et al., 2017; Notley et al., 2015; Silva & Andersson, 2021) and many described the need for a more multidisciplinary approach to treatment (Bishop et al., 2019; De Maeyer et al., 2011; Lachapelle et al., 2021; Marchand et al., 2020; Silva & Andersson, 2021; Tanner et al., 2011). They were not only keen to get out of the addiction, but also wanted to get treated underlying problems that had contributed to their addiction problems (Bishop et al., 2019; De Maeyer et al., 2011; Silva & Andersson, 2021). They were concerned that the drug treatment alone did not help against the reasons why one began to use substances in the first place, but just put a lid on these problems and feelings (De Maeyer et al., 2011; Hewell et al., 2017; Silva & Andersson, 2021).
Many of the patients saw the treatment as an opportunity to bring about a change in their lives (Granerud & Toft, 2015; Marchand et al., 2020; Silva & Andersson, 2021). The patients' experience of need for OMT was influenced by what healthcare providers identified as "inner motivation for change", but which can also be understood as anything that patients thought OMT could help them achieve, such as an education, driver's license, being able to care for the family, or to achieve better health (De Maeyer et al., 2011; Hewell et al., 2017; Notley et al., 2015; Richert & Johnson, 2015). Patients described that it was important to have a job or other interests to fill the "void" after the substances to stay clean (De Maeyer et al., 2011). The fact that the treatment was adapted to individual needs was also important to perform in the working life (Granerud & Toft, 2015).
Being able to function in a job led to a better self-esteem, better quality of life, experience of belonging, meaning and less stigma (Bishop et al., 2019; Harris, 2015; Notley et al., 2015; Toft, 2013). It was important to be seen as contributors in society and not just "a drug addict"(De Maeyer et al., 2011; Harris, 2015; Toft, 2013). Having a job and a responsibility for something contributed to a stability in life that in turn lessened the risk of relapse (De Maeyer et al., 2011).
Many also described that OMT helped to resume a social life and improve relations with their family and friends (De Maeyer et al., 2011; Granerud & Toft, 2015; Notley et al., 2015). Having a "normal" life, with "normal" relationships and being able to do "normal" things was highlighted as very important for many of the participants, to which OMT in many cases contributed to (Bishop et al., 2019; Harris, 2015; Notley et al., 2015; Toft, 2013).
At the same time, several described that they felt tied to the treatment regime, which could contribute to poorer compliance because they missed the "free life" (Bishop et al., 2019; De Maeyer et al., 2011; Granerud & Toft, 2015; Harris, 2015; Hewell et al., 2017; Lachapelle et al., 2021; Notley et al., 2015; Notley et al., 2014). This was particularly highlighted as a negative aspect of methadone treatment (Bishop et al., 2019; De Maeyer et al., 2011; Harris, 2015; Sohler et al., 2013). Some wanted more freedom, as treatment could be an obstacle in working life, but also hampered opportunities to travel and have a "normal life" (Granerud & Toft, 2015; Harris, 2015).
Patients wanted a life away from the drug scene, however, they did not want to be isolated. In some OMT centres such as methadone centres, interactions with people from the drug community were almost guaranteed, and this was a barrier to change and comply to treatment (Bishop et al., 2019; De Maeyer et al., 2011; Harris, 2015; Korthuis et al., 2010). At the same time, not being able to socialize with old friends could entail social isolation and loneliness (Silva & Andersson, 2021). These kinds of social structures - which many expected to improve through OMT- affected the patient’s ability to carry out treatment. However, patients experienced that this was not considered in their treatment.
Finding 6 Balancing treatment need with treatment stigma
Patients continuously balanced positive expectations of OMT, and negative outcomes, especially those outcomes that were related to the stigma connected to OMT, their expectations of OMT and positive outcomes they hoped to achieve (Bates & Martin-Misener, 2022; De Maeyer et al., 2011; Granerud & Toft, 2015; Green et al., 2014; Harris, 2015; Notley et al., 2015; Silva & Andersson, 2021; Tanner et al., 2011). Some patients found that the treatment had many positive non-health-related outcomes, while others found that these were lacking. However, patients generally expected such outcomes; These potential positive outcomes were a counterweight against the stigma they experienced in the system. For them to remain in OMT (with was potentially a negative experience), the positive outcomes had to outweigh the negative. They negotiated and reassessed this balance continuously. If the load of the stigma, and other negative outcomes exceeded the positive outcomes it became less profitable to follow the treatment regime. Freedom from the need to obtain drugs was weighted against the lack of freedom from being tied to the treatment regime. Improved quality of life was weighted against low satisfaction with the present life situation. Powerlessness was weighted against survival.
A "normal life" was a frequently used phrase that can be understood as the patients compromise between the stigma that comes with OMT, and the positive outcomes they hoped to achieve in OMT. Some patients reported that the positive consequences of OMT contemplated the negative, often in the form of "normalization" (De Maeyer et al., 2011; Notley et al., 2015; Tanner et al., 2011). Feeling "normal" represented a de-stigmatization from the stigma associated with OMT and substance abuse (Harris, 2015). With this understanding, the reasons for whether the patient find OMT acceptable or not are complex, and dependent of various internal and external factors.