This mixed-methods study is, to the best of our knowledge the first study set out to examine barriers towards healthcare seeking among patients in OST. According to the result from the questionnaire, the most common reasons for not seeking somatic healthcare, in spite of a perceived need, were deprioritization, fear of stigma and of being treated badly. These results are similar to the ones of a survey in Albany, New York, investigating barriers to general healthcare among clients utilizing syringe services, where the most prevalent barrier was found to be deprioritization of medical care (trying to ignore problem and procrastinate), whereas judgement by clinicians was perceived to be the biggest barrier [39]. While almost half of the questionnaire respondents declared deprioritizing as one of the reasons for not seeking healthcare when needed, stating that there were issues that seemed more pressing in the situation they were currently in. Applying mixed methods allowed studying an additional dimension, showing that reasons for not seeking healthcare, such as deprioritizing, was deeply intertwined and hard to interpret only from quantitative results.
Interviewees added that during periods of relapse they did not really have the choice to focus on their health, as everything else, except drugs and getting money to buy drugs, seized to exist. However, this did not imply that issues concerning health was not of great concern, as more than half of the respondents to the questionnaire stated that they were worried or concerned about their physical health. The majority of interviewees described being worried about their physical health, as they were highly aware that the lifestyle surrounding an opioid addiction also implies an increased risk of a broad range of diseases. This was also reflected by a rather high proportion of individuals stating that they had not sought healthcare since they were worried about being seriously ill.
During the interviews it became clear that the term “deprioritizing” consisted of an array of contributing factors. Meso-level stigma was recurrently described medical concerns not taken seriously by medical personnel. Patients described this as not being listened to, being mistrusted, judged, labelled and treated badly. In many cases the interviewees stated that there was no point in even trying as acceptable healthcare was considered highly unobtainable. Mistrust, prior experiences of being treated badly added to difficulties in finding suitable treatment, may reflect why a majority the OST patients suffering from pain did not seek healthcare [9], as described by several of the interviewees.
Meso-level stigma towards patients with SUD among healthcare professionals is well documented and the likelihood of these patients will receive suboptimal treatment is thought to be high [40]. Diseases, such as opioid addiction, which are perceived to be controllable, have shown to cause a higher degree of negative judgements and attitudes towards these patients [41–43], with a risk of healthcare decisions to be based on moral, rather than medical, judgements.
Previous experiences of stigma in the healthcare setting clearly led to avoidance of healthcare seeking, depicted by the high proportion of the questionnaire respondents stating fear of stigma and of being treated badly as the reason for not seeking healthcare. This was also confirmed by the majority of the interviewees sharing their experiences of being treated badly because of their opioid use disorder, which caused avoidance, procrastination, trying to find alternative solutions, delaying healthcare seeking until there were no other way that to turn to the emergency department. Similar responses were found in a study on methadone maintenance treatment as social control, where Australian patients reported avoiding healthcare seeking due to own, or others, experiences of stigma and of their health problems not being taken seriously. This study also pointed to how micro-level internalized stigma was depicted by the participants, referring to themselves as “junkies”, or “the plague of society”, internalizing and perpetuating the structural stigma in society [44], also described among our interviewees. The shame of having caused this situation themselves made them reluctant to seek healthcare. The feeling of being unworthy of healthcare seeking, blaming themselves for the situation they had ended up in were recurrently described by our participants. Interviewees also reported continuously experiencing the same stigma only by being an OST patient, only taking medication according to prescription. On a similar note, macro-level stigma towards methadone was reported by interviewees in California, based on the public stigma equating methadone with illicit drug use [32], which also increases the risk of OST avoidance. Previous experiences of micro-level stigma are a strong driving factor behind label avoidance, thus not seeking healthcare when needed [34]. This was frequently reported both through respondents of the questionnaire and among our interviewees. Resignation, described by several participants, as no point in even trying, could partly be explained by the negative impact internalized stigma often has on self-esteem and self-efficacy, often expressed as hopelessness, resignation (“Why try”) [34, 35].
The dimension of gender and stigma was brought to attention by one of the interviewees, as she described that by being a woman, addicted to heroin, or in OST, was even further from the social norm of how women and mothers were supposed to be like. Research on stigma in relation to women and drug use show how especially “hard users” (heroin/crack cocaine) violates social norms and expectations of womanhood [45]. Not only do women seem to face a higher degree of stigma during drug use, but also after quitting drug use [46], making it harder to escape the labels of addiction.
The additional aspect of difficulties in navigating throughout the healthcare system itself where appointments were hard to keep track of, examinations seemed frightening and where physicians were not only hard to understand, but also gave recommendations which was considered difficult to follow due to different circumstances in life. Spatial separation of specialized healthcare, and separation into different fields, made interviewees feel confused about where to turn to with their problems. Also attributed to resignation, answers from the questionnaire, stated that it would not have mattered if they had gotten an appointment as they would not be able to follow doctors’ instruction, and/or could not afford picking up prescribed medication. Quite a few had tried to get an appointment, but somehow failed, whereas a few did not even know where to turn to. As studies have shown, OST patients have a high degree of psychiatric comorbidity [20–22] and a low degree of health literacy [47] most likely leading to an array of negative effects on health, healthcare seeking [13] and engaging in one’s health, as the system also poses a high degree of responsibility on the individual. Here, providers have failed to offer available and accessible healthcare since the responsibility placed on the individual is unreachable for some. When it comes to navigation within the healthcare system Sofaer and colleagues claim that policymakers are responsible for the design of a system that actively reduces barriers, especially considering the various difficulties among vulnerable members of society [48]. On a macro-level, structural and systematic exclusion of vulnerable groups has negative effects on an array of life opportunities, including health [49].
From this standpoint deprioritizing and procrastination encompasses both subtle and profound barriers, and as long as presumptive negative outcomes overrides possible and presumptive positive outcomes, healthcare seeking will most likely be postponed, until there is no other solution than to seek emergency care. Not dealing with these barriers will inevitably increase suffering for the individual and render increased costs for society. The consequences for an ageing OST population [13] with a high burden of psychosocial challenges [20–22] and somatic disease [9–12, 23, 24, 26] with sub-optimal access to healthcare, are an increased risk of extended suffering, self-medication, increased morbidity, prolonged treatment, in-patient care and increased use of emergency care [50–52].
Healthcare should be offered without negative attitudes and discrimination on behalf of medical personnel, as the basic principles of the public healthcare policy in Sweden is based on laws emphasizing equality and care on equal terms [53]. In the await of changes in the policies and law supporting a continued stigmatization of marginalized groups, the challenge of providing access to healthcare based on equality could only be achieved if these barriers will be dealt with in a way which will be acceptable to marginalized individuals. As suggested by one of the interviewees, medical staff should have sufficient knowledge about addiction, in order to offer patients a professional encounter. Studies have shown that one of the causes of meso-level stigma is due to deficiencies among healthcare staff in general when it comes to knowledge about substance use [40]. This led to uncertainties and anxieties among staff, fed by public stigma of substance users as dangerous and manipulative.
Opioid use disorder (OUD) is a chronic relapsing disorder, and while a large proportion of patients manages to recover successfully, there is a high predisposition of relapse [1]. During these periods there is an increased risk of direct and indirect physical injuries [18], however, at the same time several patients are finding it hard to prioritize health indicates an increased need of accessible and available somatic healthcare. Added to this we also have an ageing OST population, where physical ageing, to a large extent, is accelerated by cumulative direct and indirect effects of years substance use, which will increase future need of age-specialized services with multidisciplinary care [13], it is clear that there is a high level of healthcare needs within this population.
For individuals with prior experience of stigma and discrimination, the chances of them seeking healthcare when needed is most likely increased if they were offered acceptable healthcare. When interviewees referred to staff at NEP they mentioned “trust” as a prerequisite for “good” [acceptable] healthcare, not being punished for their substance use, being cared for and treated “just like any other member of society”.
Integration of on-site PHC could contribute to increased motivation and utilization of healthcare and decrease use of emergency departments and inpatient care [50–52], without an increase in cost [52]. Also, by the reflections from participants of this study, it seems to increase availability and accessibility by offering acceptable healthcare in a supportive and familiar environment.
Methods triangulation fortifies and enriches study’s conclusion. The design is complementarily, as additional levels of perspectives offers a fuller understanding, adding another layer to the research question. Thus, this study is also subject to several limitations.
Using an observational and cross-sectional study design for the quantitative part only allow for analysis of association, not for studying cause and effect. Depending on self-reported data could present limitations, thus, to capture patients’ experiences, self-reported data is considered to be the best method [54, 55]. Representability could be debated as the study was limited to a specific area in Sweden. However, included individuals representability was considered high as nearly half of all registered patients were included, and demographics of individuals included also corresponded well in relation to age and gender of all OST patients at the four clinics were the study took place [October 2017, reported by representatives from each unit to first author KT].
There is a risk that the strategic sample of participants of the qualitative part of the study does not represent all patients in OST. It is always a risk that patients declining participation could be patients who carry a heavier weight of unmet healthcare needs and are more vulnerable. The sample was representative in relation to age and gender among registered patients at the four units where the study took place [9] and interviews showed a rich variety of information and inclusion of patients continued until reaching information saturation, where no new perspectives were presented within covered topics. As with all self-reported data, there is a risk of over- or underestimations as recalling situations and experiences that took place some time ago, however, these are the experiences and memories which participants carry with them. There is also a risk of non-response bias as certain groups might be underrepresented, deciding not to participate.