Introduction
Methods
Theoretical framework
Stigma
Dimensions of access
Study design
Setting
Quantitative methods
Data collection
Data analysis
Qualitative methods
Data collection
Data analysis
Results
Quantitative part
Description of questionnaire sample
n (%) | |
---|---|
Age (mean; SD) | 43.8 years; 10.1 |
Age (median; range) | 43 years (23–67) |
Female | 59 (28.1) |
Born in Sweden | 160 (76.2) a |
Unstable housing | 44 (21.0) b |
Unstable income | 121 (59.0) c |
Daily tobacco smoking | 150 (74.8) d |
Reasons for not seeking healthcare when needed
n (%) | |
---|---|
Deprioritizing | 53 (48.6) |
Fear of being labelled a junky and not getting helped | 51 (46.8) |
Afraid of being treated badly | 41 (37.6) |
Tried without success | 25 (22.9) |
Resignation | 22 (20.2) |
Worried about being seriously ill | 19 (17.4) |
Worried that I would not understand | 13 (12) |
I did not know what number to call | 10 (9.3) |
I did not know I was listed (or where to call) | 9 (8.3) |
I did not have a phone (or money to call for) | 4 (3.8) |
Qualitative part
Description of interview sample
Barriers | |
Substance use disorder ➢ Functionality ➢ Cognition ➢ (De-)prioritization ➢ Self-medication | |
Fear of stigma ➢ Discrimination ➢ Humiliation ➢ Mistrust ➢ Judged/Labelled ➢ Unprofessional behavior medical staff: focusing on drug use instead of problem presented. Not listening/taking patients seriously. Lack of knowledge and understanding. | |
Self-stigma ➢ Shame ➢ Blame (oneself) ➢ Not being worthy ➢ Situation caused by oneself | |
Difficulties navigating throughout the Healthcare System ➢ Not knowing where to go/whom to contact ➢ System not cohesive ➢ Lack of information ➢ Difficulties keeping appointments | |
Facilitators | |
Cohesive healthcare ➢ On-site ➢ Convenience - Going there anyway (to OST clinic) ➢ Support incl. Booking appointment/ reminding ➢ Trust - Safe space ➢ Being listened to /taken seriously. Being someone who matters ➢ Dedicated, professional staff |
Substance use disorder
Jane, a woman in her 40s, described further how the consumption of benzodiazepines affected her:You forget. You simply don’t think about it at all. There are plenty of other things that needs to be taken care of, and time just flies. Seeking healthcare is not something you prioritize while actively using drugs.
Combined with other barriers and issues that seem more pressing at the time, the importance of seeking healthcare seem to fade.I could have done more than I did, but it’s not that simple. I started consuming a lot of benzos, which resulted in everything in life spiraling out of control. It also leads to the inability for me to feel or locate pain or feeling hungry or tired. You just go numb while consuming pills.
Fear of stigma and unprofessional treatment as a barrier
The mistrust described above by Adam, where medical personnel suspect patients to be “fishing” for prescription drugs being the reason for seeking healthcare. When Paul had been rushed to the emergency department with hematemesis, a few weeks ago, the first thing Paul was asked by the physician entering the room was: “What prescription do you want old man?”. Mistrust was highlighted by many of the interviewees, especially among those suffering from long-term pain. Not receiving any help, patients felt that they did not have any other choice than to find a solution elsewhere, which often included buying drugs illegally.Believing that hospitals and primary healthcare centers should be places where one would not be judged. People are ill, and addiction should be considered as an illness, but it’s not like that. [When] You go there and… people are looking at you in a certain way. You are being judged as an addict and it is hard to sit there, in the waiting area, when people are looking and judging, especially when, in the end, you don’t get any treatment at all. If you seek help when you are in pain, then they will only think that you are trying to score some drugs.
Sarah, who had just given birth, experienced being treated badly after it came to the medical staffs’ attention that she suffered from opioid addiction. This led to her deciding to leave the hospital early, against the recommendations by the obstetrician, stating that after this experience she would wait until being almost dead before ever seeking healthcare again.[You are] being treated poorly. Worse treatment and less accurately diagnosed. Put simply, a less warm reception. As soon as it comes up that you are a drug addict you will be treated differently. That’s a fact.
Interviewees shared multiple stories on how the consequences of healthcare seeking avoidance had led to increased pain and suffering on a daily basis.Well, it’s just that I don’t call. Finally…one time I didn’t call and didn’t go to the doctor, nothing, which ended with someone taking me to the hospital. When I fell over the doorstep, my breathing was 20%.
Self-stigma and internalization as a barrier
Darren later concluded that the shame and guilt emerging from the situation when medical staff found out that he was suffering from addiction, was what made him avoid seeking healthcare, and what had made him avoid it in the past. Amongst other interviewees, Jane also referred to shame and guilt as reasons for not seeking healthcare, adding that she felt that there also was gender aspect to shame. Being a woman addicted to heroin, was thought of as being even further from the social norm:That’s why it feels so hard. Because it is a failure in a way. That failure is not something you would like to tell everyone about, or show anyone, and I think that is a large part of the reason why you don’t seek medical help, because you are ashamed. In some way this is something you have created yourself, through your destructive way of living.
Being treated poorly was considered to confirm their own beliefs of being outcasts, and the notion that they should in fact be ashamed of themselves, for making choices in life that had left them in this situation. One of the interviewees even stated that he felt that he, because of this, was not even worthy of seeking help. He also described that not only did previous experiences of stigma, but the pure anticipation of being stigmatized, make him interpret situations as discriminating, which may, or may not, have been the case:I do think that we as women somehow are even more ashamed. Being addicted. It doesn’t fit the picture of someone being addicted to drugs or heroin, or someone in the methadone program. Being a woman and a mother and all that.
It’s just that being ashamed about your situation, sometimes makes you think that there is more to it than it actually is. Maybe she [medical staff] thought or did something in a way or another, but I interpreted it differently because of the fact that I’m so ashamed that I directly connect her action being about my addiction.
Difficulties navigating throughout the healthcare system as a barrier
As confirmed by other participants, getting a referral after a visit to the primary healthcare clinic was perceived as complicated and stressful. Instead, as described by Adam, going directly to the ER, when the problem had gotten so bad that there was no other option, was often looked upon as a more rational choice.One does not always know where to turn to either. Most often there’s the process where a referral has to be arranged, you have to leave blood samples and then you have to wait for the results and maybe you have to phone at certain hours. If you don’t make an appointment and all that, you tend to drag the whole thing. You know, you have to call between certain hours. It is a lot to keep track on and at the same time I have to run up here [OST clinic], and then… it all gets a bit stressful.
Difficulties in navigating throughout the healthcare system, or not being able to “fit into the system” left a great deal of patients on the “outside” where self-medication was often seen as the only option. Interviewees were however aware that this might lead to negative consequences, as described by Jane:You get to leave some blood samples and then they will give you a new referral to somewhere, and then you’ll have to have to go there for two or three visits in order to finally get to the place you really wanted to be referred to in the first time. That’s why it sort of feels like I might as well just head straight to the emergency unit and get everything sorted there. They will check you, draw some blood, send you on a gastroscopic examination, or wherever, and then its goodbye.
Somehow it becomes easier. If I smoke some weed, then I won’t be in as much pain, or if i take a few pills, then I won’t notice it, and I will sleep better and all that. Sure, that’s the way it is, but on the other hand, this triggers my addiction. So no, it is not the best solution.
Facilitators
A few participants brought up the needle exchange program (NEP) as being a “good example” when it came to healthcare, a place where one can turn to “with everything”, not having to be subject to discriminating treatment. The majority of respondents also expressed satisfaction when it came to the services provided by their OST clinics and thought that they “did enough”. Two participants even expressed a sense of pride in being a patient at one of the OST facilities. Sarah, who described herself as an outsider when it came to other situations, expressed that the facility represented a “safe space” and that the staff were actually proud of her and of what she had accomplished:It would be much easier if healthcare personnel would have experience and knowledge of drug use. I think that would attribute to the feeling of acceptance in some way.
Patients described that as they were visiting their OST clinic regularly, in some cases daily, having access to PHC on-site was essential, as the need to visit more than one healthcare facility was perceived as stressful. One of the participants also mentioned unstable housing as a barrier and thought it would be easier for if they had access to on-site PHC. As OST staff previously had offered Amanda to administer her referrals and appointments, she expressed that easy access and support from OST staff had helped her to become more motivated to deal with issues concerning her physical health:They are so proud of me, I know they are. The way that I have dealt with everything. The doctor even told me that I’d done very well for myself. Sometimes you just need to hear that.
Several participants thought that the support of OST staff, when it came to bookings and reminders of appointments, was an important contributor to accessing somatic healthcare, even when it came to referrals to other units, as described by Adam:I can book an appointment when I’m there, and they [OST personnel] remind me one day prior to my appointment. This has given me a push as well. This [on-site] has worked out very well for me.
They [staff at OST clinic] helped me here and I thought it was great. I wouldn’t have dealt with it otherwise /…/ this makes me feel as If I actually will receive help for my problems.