Not sure if this has been posted yet. I know some meso members participated in this study.
https://www.tandfonline.com/eprint/ZWTJCKNHAAQFKJIRAVBA/full?target=10.1080/09687637.2019.1705763&
Support for non-prescribed anabolic androgenic steroids users: a qualitative exploration of their needs
Orlanda Harvey
,Margarete Parrish,Edwin van Teijlingen &Steve Trenoweth
Received 01 Aug 2019, Accepted 13 Dec 2019, Published online: 05 Jan 2020
Anabolic androgenic steroids (AAS), Image and performance enhancing drugs (IPEDs), Support, Harm minimisation, Testosterone replacement therapy, information
Introduction
Anabolic-Androgenic Steroids (AAS) are synthetic derivatives of testosterone that mimic male sex hormones, and are used to build muscle mass (Pope & Kanayama, 2012). A meta-analysis of AAS use indicates a global lifetime prevalence of 3.3% (men: 6.4%, women: 1.6%) (Sagoe, Molde, Andreassen, Torsheim, & Pallesen, 2014). The use of AAS has roots in sports, however, in recent years they are increasingly used by the general population (particularly male gym users) for their anabolic effects (Bojsen-Møller & Christiansen, 2010; Nutt, 2012). The benefits of AAS use are increased muscle and strength (Kicman, 2008) with a wide range of motivations for use (Greenway & Price, 2018). There are also potentially physical and psychological side-effects including: testicular atrophy, liver toxicity, gynaecomastia, myocardial injuries, infertility, depression, aggression and anxiety (Pope & Kanayama, 2012). AAS users access a range of professional services including support from medical professionals, pharmacies, and Needle and Syringe Programmes (NSPs), but mainly rely on peers/online fora for advice (Kimergård & McVeigh, 2014; Tighe, Dunn, McKay, & Piatkowski, 2017). The legal status of AAS use differs from country to country (Van de Ven, Mulrooney, & McVeigh, 2019). Much of the support in the UK, New Zealand and Australia comes through public health initiatives to combat blood borne viruses (BBVs) (Kimergård & McVeigh, 2014) and is prevention focussed (Bates et al., 2019) with little such support in the USA.
In the UK there has been a drive towards harm reduction support, which rather than focusing on abstinence, seeks to minimise the harmful effects of substance use (Karoll, 2010). Such an approach focuses on the consequences of choices, recognising abstinence as an ideal whilst accepting alternatives as reducing harm, and considering whether behaviours are beneficial or detrimental to users and the wider society (Karoll, 2010) and academics have seen that harm reduction services include AAS users (McVeigh, Kimergård, Bates, Hope, & Ncube, 2016). However, AAS users can be wary of using such services, for a variety of reasons including stigma, more faith in the knowledge of experienced users (Glass et al., 2019; Harvey, Keen, Parrish, & Teijlingen, 2019), or not perceiving the service is for them, e.g. why go to a needle exchange if using only oral steroids (van de Ven, Zahnow, McVeigh, & Winstock, 2019)? Salinas, Floodgate, & Ralphs (2019) argue that there is a need to review the public health response to AAS use and the potential associated harms. For a start, public health initiatives should utilise more innovative methods of dissemination via peer networks, or involve AAS users in the co-production of harm minimisation messages and materials (Bates, Tod, Leavey, & McVeigh, 2018; Glass et al., 2019; Griffiths, Henshaw, McKay, & Dunn, 2017; Van de Ven, Zahnow, et al., 2019). The AAS users’ voice is often missing (Harvey et al., 2019) and it could be argued that a way to increase engagement would be, where possible, to merge what users want within the public health approach. Consequently, the aim of this qualitative study was to ascertain the types of support needed by people use non-prescribed AAS.
Method
We conducted an online questionnaire aimed at predominantly recreational AAS users. The survey used three sampling methods: convenience, self-selected (Patton, 2013; Rees, 2011) and snowball sampling (Shaghaghi, Bhopal, & Sheikh, 2011). Internet distribution can help reach hard-to-reach populations (Rodham & Gavin, 2006), but it makes geographically controlling the location of the respondents difficult. Options for support and information may be impacted by location, both in terms of laws and policies on provisions of service, but evidence suggests that AAS users spend a lot of time online, where they access and tap into knowledge from experienced users and share research and information (Andreasson & Johansson, 2016). Moreover, the focus is on ideal support for AAS users and so despite the different laws and services in different countries, each interviewee can still offer something relevant. Consequently, it was decided not to exclude on the basis of nationality, but only age and AAS use. The first author contacted each person who had completed the questionnaire and who was willing to be interviewed about their in-depth experience of support (or lack thereof).
Interviews
Semi-structured interviews, covering several topics including: side-effects experienced, advice sought, and support wanted, were conducted (Darlington & Scott, 2002). Participants were adults (age 18+) who were currently using or used non-prescribed AAS in the last six months. Ethical Approval was gained from the Institutional Review Board and from the Addictions Services as required.
A video interview was conducted with a current AAS user as a pilot (van Teijlingen & Hundley, 2001) and as no changes were made as a result of this the pilot interview was included in the final dataset. A wide range of methods for undertaking the interview was offered to the participants, including via the internet (Rodham & Gavin, 2006), and by telephone (Holt, 2010). By offering a choice of method the researchers were hopeful that this would encourage this hard-to-reach population to participate as it allowed them control over the level of anonymity i.e. through the use of pseudonyms and typed answers. However, typed live chat interviews may not allow for the same level of questioning as the verbal interviews, as they are constrained by the medium of typing (Opdenakker, 2014). Participants’ interviews lasted between 45 and 110 minutes. The interviews were transcribed (except for two done via live typed ‘chat’). Participants were offered the opportunity to review the transcripts.
Data analysis
Thematic Analysis was applied using NVivo (Braun & Clarke, 2012). The interview data were coded both deductively and inductively and a coding framework was developed. Three interviews were coded independently by the third author and a secondary coding framework was created to improve the reliability of coding (De Wever, Schellens, Valcke, & Van Keer, 2006). The second author used the framework to code three different transcripts for quality assurance, and no revisions were made as a result of this procedure. To ensure the voice of the AAS user is at the fore, spelling, grammar and wording has not been changed in the ‘chat’ text or interviews. Moreover, direct quotes are accompanied by participants’ pseudonyms, age, and country.
Findings
The study entailed in-depth semi-structured interviews with 23 self-declared AAS users. Participants were male, aged 20–53, with the majority being white, employed and having a college level of education or higher (CSVDisplay Table
Figure 1 identifies six themes and a number of sub-themes on support and information wanted by AAS users.
Figure 1. Themes: information and support wanted by AAS users.
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Theme 1: specific types of information wanted: managing risks
Theme one identifies the specific types of information wanted based on three sub-themes (see Figure 1). This theme was sub-titled ‘managing risks’ as interviewees acknowledged both risks and ways to mitigate for them:
We all know that what we do can damage us, but we’re not going to stop. Instead, it would make more sense for people to be educated on how to lessen the side-effects and the damage. People will take them irrespective of whether the advice is there or not… Me being one of those people. (Clinton, 20, UK)
The advice on types of substances to use was considered important as many had strong feelings that some substances were more harmful than others. A good example of this was ‘Trenbolone’ as many felt it had too many negative effects. Nine participants talked about the pros and cons of Trenbolone; pros being the dramatic muscle change effects, and the cons included night sweats, shortness of breath and behavioural changes, such as quick to enrage and loss of empathy:
(Trenbolone) made me so indifferent about …my relationship with the people around me. It …was almost like a sense of arrogance that no one else really mattered around me. (Peter, 24, UK)
Some had stopped using it as a result of severe side-effects, but this was not so easy for others:
that’s why I like doing Tren (Trenbolone) so much, because it, it just sucks everything down really well … I don’t know if I’m gonna keep doing it because … it makes me, I’m not empathetic to stuff. (Joel, 34, USA)
The authors did not specially set out to investigate the impact of individual brands of AAS, however, as this substance was referenced numerous times with significant side-effects it might be useful for those working in the field and AAS users to read the quotes included (Supplemental material 1).
Participants wanted information on long-term effects, such information needed to be balanced, knowledgeable and evidenced-based:
where I could actually get some evidence-based advice on it, like from somebody who knows what they’re talking about not some guy who used to be a heroin addict in the needle exchange. Cos, he clearly doesn’t know about steroids… break that down and say, look what you take matters a hell of a lot when it comes to the side-effects you’re …going to get and also the results that you’re going to get from it. (Peter, 24, UK)
Moreover, information needed to be backed up by evidence and academic studies were needed to provide this:
to be clinical trials and moderated usage of it under the supervision of a health professionals… we wouldn’t have to rely on these forums and people using their own bodies to experiment. (Paul, 29, USA)
Theme 2: mechanisms for the communication of advice
Several channels were suggested as to how information on AAS should be communicated (Figure 2).
Figure 2. Mechanisms for communication.
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One participant suggested a YouTube channel sponsored by a health authority, but others raised concerns that such services were often prevention focussed. The confidence that many participants put in ‘broscience’; i.e. online advice from experienced users (‘brothers’) was pronounced and participants had a number of ways of identifying those who were to be trusted:
I am very selective with who I get my information from and I’ll make that decision on who I think is credible and based on you know are they referencing studies, have they got sort of testimonials of people that they’ve worked with, are they like an authority in that area. (Peter, 24, UK)
There was a call to consider this harm reduction message in a balanced way:
I live in the United States and they refuse to even admit that steroids will put on muscle mass. (Paul, 29, USA)
Without resulting to the use of scare tactics:
…the federal government says a drug, ‘a joint is a pill, is a needle, is a grave’, and by saying that all drugs are equally harmful… that’s the problem about, …being hysterical, is that you lose all credibility for a public health intervention, if your messages are informed by moralism as opposed to public health… take a scientific fact-based, evidence-based approach to these topics and take the moralism out of it. (Hugo, 53, USA)
Moreover, there was a concern that information should be targeted at young people, as they are more vulnerable. For one participant this was the key motivation for taking part in the study:
I was actually ecstatic to participate … you should see the amount of kids that scare me, that are just dumping all these hormones in their body and they don’t give a crap about their health. So anything that’ll, that’ll help people understand …and possibly contribute to harm reduction I’m all about. (Lewis, 37, USA)
Theme 3: specific types of support wanted: medical and emotional
The third theme with associated sub-themes identified the specific types of practical support wanted:
Theme 3 – Subtheme 1: medical & practical support
When talking about AAS side-effects and support needed no-one expressed concern about BBVs. However, some, including US participants, wanted more access to NSPs but more for convenience than harm minimisation:
needle services would probably be a good thing, I don’t think it is as necessary as someone that is using heroin or something like that …there is this sort of connotation all steroid users are sharing needles which is really not the case even in the medical literature. (Asi, 28, USA)
One person was less concerned with obtaining free needles and more in having a place to easily dispose of needles safely:
during my first cycle they had sharps bins, but it was very convenient, I used to take them to the gym in a bag and drop them off, but not now. (Del, 35, UK)
In the UK, NSPs offer this drop-off service but many felt a certain stigma attached NSPs:
it would be ideal if that was more available but …once I tried to ask for needles at a needle exchange …they thought I was on heroin… I just don’t want to deal with the system …I’d rather just go and pay for the needles rather than deal with that sort of… judgement. (Powel, 34, UK)
Participants also referenced the need for some sort of service to test the quality of products, raising concerns about using safely and minimising risk.
Most stated that getting blood panel tests done was important and ideally this would include an opportunity to discuss the results with medical professionals. Such support also potentially acting as a preventative measure:
Somewhere you could get your bloods done and actually get someone to tell you what it means, what you need to do…I think it would put a lot of people off for definite if they realised, like your liver toxicity … kinda telling people, look this can have these effects in the long term. (Andrew, 25, UK)
One participant argued that if heroin users had a right to free needles then AAS users had a right to blood tests for harm minimisation purposes:
a government large scale public health problem because from a policy standpoint, …whether it’s heroin users having a right to clean needles or …bodybuilders having a right to medical monitoring of their blood. (Hugo, 53, USA)
Three people expressed a desire to be able to give blood and felt there were more risks from doing this yourself:
taking steroids in general is not overly harmful when taken in the correct way but if you had something like trying to drain your own blood to bring health markers into range that’s whenever harm really starts to happen. (Asi, 28, USA)
And one participant’s solution raised a potential public health risk:
to be on the safe side, I donate every few months just to reduce the haemoglobin and haematocrit. …obviously I have to lie on the form because they won’t take the blood if you have taken steroids. If there was a way … to give blood in an official way then that would be a good idea. (Del, 35, UK)
Many would seek support from a medical professional, including specialists such as endocrinologists, and wanted substances prescribed to mitigate side-effects both whilst on cycle but also for Post Cycle Therapy (PCT). For others the concern was not stopping use but ways to safely reduce usage, continue to use safely long-term and be able to openly talk about issues with a doctor:
I would like to talk to my doctor about this stuff and make sure, I just want to be safe. I don’t want my liver, or my kidneys to get destroyed from these drugs. I wish there was a proper, there was a right steps medically [sic]. (Joel, 34, USA)
However, participants were clear that professionals needed more specialist knowledge on AAS. This perceived lack of knowledge was seen as a barrier, even for participants who said they would be willing to seek professional help to stop:
GPs and whatnot are super busy anyway, but …somewhere to get stuff from …to help counteract stuff, like clomid …If the help was totally anonymous, and also very high in knowledge. This is not the case now. (Andrew, 25, UK)
The anonymity was also important, as some had heard stories about AAS use recorded on medical records impacting on insurance policies and this was also a concern.
There was a request for medical professionals, particularly in the UK, to recognise the need for support for low testosterone, and many users cited TRT as a reason for continuing use. Often describing their frustration with the medical profession’s reliance on set ranges and not taking into account the psychological impact on the individual:
I can’t stop everything that is not an option, because I have low testosterone naturally, I need to be taking something. I was hoping to do this with the NHS, …they’re really useless… if the NHS don’t want to help, I will have to buy that myself online, and take that possibly for the rest of my life. (Del, 35, UK)
Theme 3 – Subtheme 2: support for emotional impact of AAS use
Some participants felt there was a need to consider the wider emotional impact of using AAS, both in terms of reasons for starting use:
People go on steroids for the other reasons so these root causes should be treated first. (Powel, 34, UK)
and the impact of the emotional side-effects experienced on and off-cycle.
The side-effects of PCT were often related to low mood and increased anxiety. There were mixed views on benefits of PCT with some identifying emotional side-effects of using substances to mitigate side-effects:
…is PCT protocol … and I noticed that the clomid had an effect on me actually made me feel quite anxious and it made me feel quite depressed. (Peter, 24, UK)
and others choosing not to use PCT but instead drop to a lower continual dose to avoid the emotional side-effects:
either people are going to use them and go through what is called PCT…or what you can do is TRT and have times when you’re going to use more and that is the choice that I made because it’s generally healthier choice and because you don’t go through these huge swings. (Johan, 36, Hong Kong (French))
However, thoughts were different when it came to mitigating emotional side-effects when on-cycle, in relation to those around increased irritation and anger. The predominant message was that AAS users were responsible for recognising and managing these themselves. Meditation was referenced by one participant as a useful tool to help with this:
I am quite self-aware you see I meditate every day. So, I notice things about myself very, very easily. So, I’ll notice that my patience is a little bit more thin. (Peter, 24, UK)
In terms of types of support, participants recommended a need for specialised counselling, and suggested: education, managing side-effects, dedicated phone lines, psychotherapy, someone to talk to, cognitive-behavioural therapy, and peer support groups.
In terms of overall access to information and support, one participant advocated for specialist centres:
specialist clinics which offer a confidential service are a must when it comes to steroid users. The clinics that I have noticed that operate very well do three things. First of all, they are staffed by highly knowledgeable people who know the effect that steroids have on the body so they’re very quick to identify which side-effects may very well be steroid related and where referrals are appropriate. They offer full panel hormone blood tests which, again, are very useful at identifying potential problems and they are also run by non-judgmental people who are very good at putting people at their ease. (Isaac, 40, UK)
Isaac’s quote highlights the importance of having non-judgemental professionals and this leads into the fourth theme of stigma.
Theme 4: stigmatisation of people who use AAS
Several participants had experienced stigma, mainly at the hands of professionals:
I had a falling out with my one doctor …I was always open and honest … And instead of … talking to me about it, … he would more, more or less berate me about it, you know, so, I never felt that if I did have a problem…, I would have been able to bring it to him comfortably. (Lewis, 37, USA)
Moreover, it was clear that this was a subject discussed openly amongst users who shared stories. This then influenced people who had no negative personal experiences:
the experiences my sort of friends and team-mates have had, with healthcare professionals have been, … entirely negative… I feel like going to a healthcare professional with anything you know would be a last resort. (Alvin, 36, UK)
Others talked about stigma in relation to using NSPs. They felt these services stigmatised them by classing them in the same group as other substances users who used dependence-inducing drugs such as opiates, often themselves reflecting societies’ stigma of such people referring to them as ‘junkies’, and as a result often chose not to use such services.
Theme 5: paying for support services
The fifth theme was a clear willingness to pay for support services, although this was caveated that the cost would need to be reasonable. Many purchased their AAS-use paraphernalia online (and preferred doing so), paid to get blood-tests done privately and one even made it clear he used to donate whenever he got needles from an NSP. One participant felt that although it would be good to have free bloodwork that this might make people’s decision to start using an easier one and felt therefore that payment for bloodwork was an important part of the decision-making process. Another saw AAS use as his choice, and therefore managing the side-effects were his responsibility, and should be at his own cost:
it is my choice to take these steroids … it’s my responsibility, it’s my body…morally I don’t think it’s right for me to put that demand on the NHS. (Peter, 24, UK)
Theme 6: legality of AAS use
The legal status of AAS impacted on support in relation to harm minimisation as people were using them anyway. Some felt that if AAS use was legalised, people would feel more able to seek advice from medical professionals and be able to buy from pharmacies which would reduce risk, as products would be of a good quality and not adulterated:
I would like to see it legalized so there would be like a standard, for example because I know a lot of people have fucked themselves up using somebody’s homebrew that they gave them infections. (Lewis, 37, USA)
Your advice and your support and your sources and your education is driven underground and that is a problem. (Peter, 24, UK)
It is worth noting that AAS users may have an ulterior motive in that by using AAS they may put themselves on the wrong side of the law. Moreover, not all participants agreed and one suggested that AAS should not be legalised:
I just think there should be a way where it can remain, I guess banned to the public but at least allow there to be clinical trials and moderated usage of it under the supervision of a health professionals. (Paul, 29, USA)
It was acknowledged that the legal situation affects public health polices, and here it was clear that few felt that the policies in place provided the necessary support for people who use AAS. The idea that people’s experiences were unique and could not be applied generically to use was referenced throughout the interviews. One participant summed up individualisation as a need to understand the motivations and circumstances of the individual:
when we talk about anabolic steroids, I think we have to say, ‘in what context, by whom and from whom, and for what purpose, … and under what circumstances?’ …We need to get the right on a policy level, we need to get the right kind of help, for the right kind of sub communities and not have a one size fits all approach. (Hugo, 53, USA)
Discussion
Harm minimisation
Many of the wishes for support services in this study are aligned to some of the services already supplied in a range of western countries, and others have been recommended by previous studies e.g. need for PCT advice (Griffiths, Henshaw, et al., 2017), and specialised harm reduction interventions for AAS users (Kimergård & McVeigh, 2014). A number of concerns raised in this paper have been previously raised in the literature including: risks of self-phlebotomy (Brennan, Wells, & Van Hout, 2018), stigma from health professionals (Griffiths, Murray, & Mond, 2016; Simmonds & Coomber, 2009), a risk of poor quality substances (Abbate et al., 2015; Cho et al., 2015; Coomber et al., 2014). The current public health focus on harm minimisation treats AAS users as ‘another drug user’ which could be another reason as to why AAS users prefer to avoid public health services. This study echoes previous studies highlighting that AAS users are reluctant to engage with health services (Zahnow, McVeigh, Ferris, & Winstock, 2017) but wish to do so. Desires such as to discuss the effects of use with medical professionals; to see more research-led studies and evidenced-based advice, alongside the willingness to pay for services potentially does set them apart from the more traditional users of such services. This desire for evidence-based advice is not surprising as this population has a high level of ethnopharmacological knowledge (Monaghan, 2002), which also goes someway to explain why participants were advocating for more human-based scientific research.
The public health focus on BBV risk aligned to AAS use is not something that the participants recognised, which raises the question why this focus? Participants talked about accessing NSPs and receiving information and needles; however, participants also spoke of stigma attached to this. Moreover, AAS users’ practices when injecting differ from those who inject illicit substances (e.g. heroin); the former tend to use swabs, do not share needles or vials and rarely re-use needles (Underwood, 2019). The majority of harm minimisation advice tends to be through NSPs and Van de Ven, Zahnow, et al. (2019) argue that this may miss an entire group of people who only use AAS orally. It could be argued that those working in this field, know that they are only likely to be funded if the focus is on wider public health issues i.e. BBV prevention, however, this is not helpful, if that very focus is a barrier for some people accessing the service, and in this study less than half of the UK participants had accessed NSPs.
Support services
Based on the wishes of the participants from this study the authors have outlined the services that it might be useful for a specialised steroid clinic to provide in order to meet the wide range of potential needs for people who use AAS (Figure 3).
Figure 3. Suggested services for specialist IPED/AAS Clinics.
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This study highlights that first and foremost AAS users wanted medical support for side-effects and previous studies have shown that access to medical examinations can help AAS users feel safer (Kimergård & McVeigh, 2014) and consequently it is worth including this provision as part of any specialised steroid service. Another potentially useful addition would be access to advice on nutrition and exercises, as some participants acknowledged that they started too young, and with the right advice on diet and exercise may not have started using AAS so early. Furthermore, offering courses or sessions in mindfulness and meditation might be beneficial as some participants stated they already used such techniques to manage some of the emotional side-effects. Users wanted professionals to have personal experience, which is an unrealistic expectation; however, such wishes could in part be met by the setting up of peer-support groups. Services could require service users to make a donation, as this could provide services with a way of funding potential outreach services e.g. peer-led needle distribution (Kimergård & McVeigh, 2014), reduce stigma, and align with their value of taking responsibility for their use.
Considering the recommendations for steroid clinic services (Figure 3), potentially the most controversial of these could be offering testing for quality of substances. However, evidence shows that much of the AAS sold is adulterated (Coomber et al., 2014) and testing of illicit recreational drugs is now part of many modern harm minimisation strategies (Brunt, 2017). AAS users were understandably concerned about drug quality and some even paid for testing through online companies as part of their personal harm minimisation strategy. This study also found evidence of AAS users not only wishing to give blood as a harm minimisation technique but also using blood donor services, and not disclosing their AAS use. Self-phlebotomy is something that health professionals need to be aware of (Brennan et al., 2018), but it is also relevant to note there could be risks from public blood donation too.
Interventions should be targeted at people who use AAS to improve their health outcomes (Bates et al., 2018) and the majority of interviewees supported this perspective, feeling that a focus on stopping use was not only unhelpful but also unrealistic. This is relevant as users noted that stopping use would not be possible due to their concerns about the negative effects of having low testosterone levels (due to age or AAS-use). The concerns around low testosterone causing depression and impacting on quality of life, appear to be one area within this sub-community that deserves further attention. It is important for medical professionals to be well informed about IPED use not just to support physical health issues but also those experiencing low mood when off-cycle (Griffiths, Henshaw, et al., 2017). The idea that medical practitioners are not taking the impact of low mood among men seriously regardless of the cause is relevant because research suggests that there is a disparity with diagnosis of depression in gender, with medical practitioners less likely to diagnose depression in men (Salk, Hyde, & Abramson, 2017). The time is right to focus support services on psycho-social aspects of use as there is a wider societal movement to de-stigmatise mental health issues for men. Thus, further research into the emotional experiences coming off-cycle and behavioural changes such as increased irritation or anger, and loss of empathy when on cycle would be useful to inform the provision of effective support services.
Timing of intervention is important and it is key to consider transitions in people’s lives (Bates et al., 2018), such as reaching an age where testosterone levels fall naturally or deciding to change your body shape and/or joining communities where AAS use is normalised. This supports participants’ calls for credible youth intervention, understanding that saying no is unrealistic. Any intervention needs to be tied to motivation (Boardley, Grix, & Dewar, 2014) and this study found that there was a notion that users wanted to be understood in relation to their personal motivations for use. Therefore, the authors suggest a need for further research into how motivations for use might impact on the type of support AAS users want across the lifespan.
Mechanisms of communication
In relation to the provision of information and support, the ‘one-stop-shop’ service suggested could be an answer but does not address all the issues raised (possibly due to funding or policy issues). To do that it would need to be provided in conjunction with a range of other services via other sources, such as the online communities. Improving the provision of information through modern media is important to prevent harms and reduce the influence of those with vested interests (e.g. suppliers) (McVeigh, Evans-Brown, & Bellis, 2012) and using social media and online networking has been recommended (Glass et al., 2019). The authors add their voice to many before us (Bates et al., 2018; Glass et al., 2019; Griffiths, Henshaw, et al., 2017; Kimergård & McVeigh, 2014; Salinas, Floodgate, & Ralphs, 2019; Underwood, 2019; Van de Ven et al., 2019) who are advocating for a review of public health initiatives with a view that they look to utilise more innovative methods of dissemination via peer networks.
Underwood (2019) advocates engaging the experienced users, the social influencers, to promote harm-reduction services, and reminds us that when we publish research on AAS we are often speaking directly to the community, as users seek out evidence-based knowledge and this was clearly evidenced in our interviews. Furthermore, it was not just the channels that were seen as important, but that the advice was balanced. Previous studies have advocated the need for professionals to acknowledge the efficacy of steroids (Griffiths, Murray, Mitchison, & Mond, 2016) and this was something that was desired and a more individualised approach is needed ‘based on thorough assessment of risk behavior, lifestyle and underlying health’ (Zahnow et al., 2018, p. 111). Our interviews highlight the broader necessity to reconsider the current support approaches, moving away from conversations about needle sharing and stopping use; to conversations about wider long-term harm minimisation and practical advice including ‘how to inject’. In this study most participants were self-taught and used online instructions or videos to support this. There are videos by professionals on safer injecting (Public Health Wales, 2019). Perhaps increasing the publicity of such resources and involving experienced users in such initiatives might help ensure that the ‘right’ information is being shared to help people minimise risks, with NSPs also offering this guidance.
Removing barriers
Removing barriers to access is key. The AAS users readily shared information and stories, and therefore if one person has a poor experience with a professional that this is shared widely within the community. Professionals need to be aware of both this network and also acknowledge how harmful their judgements can be with regards to people accessing support. What is surprising around the concept of medical professionals needing to be both credible and non-judgemental is that this information has been available in the academic literature for a long-time (Grogan, Shepherd, Evans, Wright, & Hunter, 2006; Simmonds & Coomber, 2009). This raises the question of what more needs to be done by the academic community to help encourage the academic evidence to be incorporated into policies and practice.
Identity as an AAS user
One central idea integral to each of the six individual themes identified, is identity. It is clear from this study that AAS users do not identify themselves as ‘illicit drug-users’ in the sense they clearly want to distance themselves from people who are dependent on heroin or cocaine, which echoes the findings of other studies (McVeigh et al., 2012), and although there is evidence of poly-drug use within this community (Begley, McVeigh, & Hope, 2017; Cornford, Kean, & Nash, 2014), only one interviewee talked of using any other illicit drugs and participants were clear that they saw their use as different to that of other users. Moreover, some of those who saw their use as TRT, no longer saw themselves as AAS users but instead just saw it as a form of self-prescribed medication. There is a need to develop ‘better understandings of the health and wellbeing issues’ for AAS users in order to ‘design more credible and engaging policy responses’ (Moore, Hart, Fraser, & Seear, 2019, p. 15), and the ‘one-size-fits-all’ attitude of public health information literature is inadequate, as it does not acknowledge the diversity of people who use AAS (Underwood, 2019).
Strengths and limitations
To our knowledge this is the first study to directly ask AAS users about the ideal types of information and support they want. This study may not represent all types of AAS users; however, there were similarities found across geographical regions and the age ranges which suggest a level of diversity and consequently sheds light on the types of information and support wanted. Participants may have under-reported the severity of side-effects or need for support because of shame or fear that such studies may mean an increase in attention from authorities into steroid use, which could negatively influence the legal situation. This study acknowledges that there may be geographical/legal differences dependent on country of residence. The study also did not look at the specific information and support needed for each of the different substances and associated brands, however, it did find that one AAS, namely Trenbolone, was referenced as having problematic side-effects and this is a potential area for further research. This study also recommends that specialised steroid clinics are potentially a good way of providing support to AAS users, however in line with previous studies (Kimergård & McVeigh, 2014; Tighe et al., 2017), a limitation is the lack of evidence-base concerning the impact of such services (often due to policy changes or funding limitations on such services) and therefore there is a need for evaluation of the effectiveness of such services particularly aligned to harm minimisation for this population.
Conclusion
There is a need to encourage professionals to share good practice not only with other professionals but more widely within the AAS community and we advocate that any approach be person-centred. Moreover, governments need to take note of the wealth of building evidence for such a personalised approach within both the AAS user and academic communities. We would advocate that professionals continue to take a harm minimisation approach and investigate ways to engage influencers within the community with harm minimisation activities, as well as try to measure the impact of any specialised AAS services. We advocate for more consideration being given to the types of support for men who are experiencing depressive symptoms and those with psychological complications surrounding AAS use. We support the development of specialized steroid services as part of public health initiatives and suggest they consider ways for AAS users to give voluntary donations or be charged a nominal fee for specialist harm minimisation paraphernalia. Emphasis needs to be placed on ensuring services are delivered by knowledgeable, non-judgemental professionals who take a neutral view of AAS use and understand the complex motivations for use and the benefits.
Acknowledgements
Thank you to the participants for taking part in this study. Thank you to the reviewers for their comments. Vincent Marmion for his support with the figures.
Disclosure statement
No potential conflict of interest was reported by the authors.
Supplemental material
Support for non-prescribed anabolic androgenic steroids users: a qualitative exploration of their needs
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Appendix 1
Self
-
reported effects of using Trenbolone
This study did not seek to find out the individual effects of specific brands or types of AAS
however, one substance ‘Trenbolone’ did stand out as something that could have very
beneficial effects but was also
particularly problematic to use, in relation to unwanted
behavioural side effects.
Use
Quote
Effects on
Cycle
‘compounds cause behavioural changes like Trenbolone so I no longer use that steroid’
(Nick/USA/50)
‘Tren
has caused heightened aggression. If estrogen [sic] spikes I can get moody but knowing
my dosages and blood levels I can actually manage moods more’ (Rod/Australia/39)
‘Trenbolone makes me very short tempered, aggressive and my mind is filled with visci
ous
[sic] and violent thoughts’ (Don/UK/39)
‘
that is the one compound that does make me raise an eyebrow, but just because of the people
that have come back to me after using it, and said, that I can’t ever use that again, I went crazy’
(Robert/Spain/34)
‘
I never got on with Trenbolone. Trenbolone was one steroid that did make me irritable and did
make me agitated.’
(Isaac/UK/42)
‘I did use one compound: trenbolone, for a while and I had every negative side effect with it
imaginable with that; I had shortness of breath, I had flushing, I had night sweats, I had quick,
quick to enrage.’
(Hugo/USA/53)
it made me so indifferent abou
t like my relationship with the people around me. It's like it was
almost like a sense of arrogance that no one else really mattered around me’
(Peter/UK/24)
‘
I'm running Tren
right now, and you know I get the full nightmares, I get the extreme sweats,
the insomnia is pretty bad... I don't forget a single bit of the, the terror of the nightmare.’
(Lewis/USA/37)
‘Tren is not the best drug to take, ...I am not emotional but Tren’
s not a good drug if you are
not very in control of your impulses and your emotions and I am on Tren right now but very
small doses of it because I've taken it before, and like man it just, it just makes you so
depressed for no reason... I'm terrified of g
etting fat again... so that's why I like doing Tren so
much, because it, it just sucks everything down really well ...I don't know if I'm gonna keep
doing it because ...I'm not empathetic to stuff... I don't like the person that I am, when I'm
doing it.
’
(Joel
/USA/34)
‘
I am on trenbolone and that could cause, actually that could cause problems right now.
Definitely it's
easier to get angry and Yeah, lose control that’s for sure. Especially on
trenbolone because that's a very specific compound, lots of friends and guys at the gym would
say the same thing’
(Lev/Canada/32)
‘I used it for a period of around eight weeks and
I didn't get any sort of heightened aggression
which some people find I didn't you know I got night sweats, it reduced the amount of sleep I
needed it seemed and but it made me so indifferent about like my relationship with the people
around me. It's like
it was almost like a sense of arrogance that no one else really mattered
around me’
(Peter,24,UK)
‘I am having occasionally light night sweats, occasionally, slight er acid reflux, but no problem
at all. It is very easy...um, with the Tren, I noticed
initially a slight increase in irritability when
I am driving, so you know, swearing at other drivers, you know, in my head sometimes, but
that has passed now’ (Del,35,UK)
‘Very low mood after using trenabol’ (Grant/UK/29)
After a Cycle
‘First cycle, off Tren I was very insecure’ (Jason/UK/40)
Appendix 1
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Support for non-prescribed anabolic androgenic steroids users: a qualitative exploration of their needs
Orlanda Harvey
,Margarete Parrish,Edwin van Teijlingen &Steve TrenowethReceived 01 Aug 2019, Accepted 13 Dec 2019, Published online: 05 Jan 2020
Anabolic androgenic steroids (AAS), Image and performance enhancing drugs (IPEDs), Support, Harm minimisation, Testosterone replacement therapy, information
CrossMarkIntroduction
Anabolic-Androgenic Steroids (AAS) are synthetic derivatives of testosterone that mimic male sex hormones, and are used to build muscle mass (Pope & Kanayama, 2012). A meta-analysis of AAS use indicates a global lifetime prevalence of 3.3% (men: 6.4%, women: 1.6%) (Sagoe, Molde, Andreassen, Torsheim, & Pallesen, 2014). The use of AAS has roots in sports, however, in recent years they are increasingly used by the general population (particularly male gym users) for their anabolic effects (Bojsen-Møller & Christiansen, 2010; Nutt, 2012). The benefits of AAS use are increased muscle and strength (Kicman, 2008) with a wide range of motivations for use (Greenway & Price, 2018). There are also potentially physical and psychological side-effects including: testicular atrophy, liver toxicity, gynaecomastia, myocardial injuries, infertility, depression, aggression and anxiety (Pope & Kanayama, 2012). AAS users access a range of professional services including support from medical professionals, pharmacies, and Needle and Syringe Programmes (NSPs), but mainly rely on peers/online fora for advice (Kimergård & McVeigh, 2014; Tighe, Dunn, McKay, & Piatkowski, 2017). The legal status of AAS use differs from country to country (Van de Ven, Mulrooney, & McVeigh, 2019). Much of the support in the UK, New Zealand and Australia comes through public health initiatives to combat blood borne viruses (BBVs) (Kimergård & McVeigh, 2014) and is prevention focussed (Bates et al., 2019) with little such support in the USA.
In the UK there has been a drive towards harm reduction support, which rather than focusing on abstinence, seeks to minimise the harmful effects of substance use (Karoll, 2010). Such an approach focuses on the consequences of choices, recognising abstinence as an ideal whilst accepting alternatives as reducing harm, and considering whether behaviours are beneficial or detrimental to users and the wider society (Karoll, 2010) and academics have seen that harm reduction services include AAS users (McVeigh, Kimergård, Bates, Hope, & Ncube, 2016). However, AAS users can be wary of using such services, for a variety of reasons including stigma, more faith in the knowledge of experienced users (Glass et al., 2019; Harvey, Keen, Parrish, & Teijlingen, 2019), or not perceiving the service is for them, e.g. why go to a needle exchange if using only oral steroids (van de Ven, Zahnow, McVeigh, & Winstock, 2019)? Salinas, Floodgate, & Ralphs (2019) argue that there is a need to review the public health response to AAS use and the potential associated harms. For a start, public health initiatives should utilise more innovative methods of dissemination via peer networks, or involve AAS users in the co-production of harm minimisation messages and materials (Bates, Tod, Leavey, & McVeigh, 2018; Glass et al., 2019; Griffiths, Henshaw, McKay, & Dunn, 2017; Van de Ven, Zahnow, et al., 2019). The AAS users’ voice is often missing (Harvey et al., 2019) and it could be argued that a way to increase engagement would be, where possible, to merge what users want within the public health approach. Consequently, the aim of this qualitative study was to ascertain the types of support needed by people use non-prescribed AAS.
Method
We conducted an online questionnaire aimed at predominantly recreational AAS users. The survey used three sampling methods: convenience, self-selected (Patton, 2013; Rees, 2011) and snowball sampling (Shaghaghi, Bhopal, & Sheikh, 2011). Internet distribution can help reach hard-to-reach populations (Rodham & Gavin, 2006), but it makes geographically controlling the location of the respondents difficult. Options for support and information may be impacted by location, both in terms of laws and policies on provisions of service, but evidence suggests that AAS users spend a lot of time online, where they access and tap into knowledge from experienced users and share research and information (Andreasson & Johansson, 2016). Moreover, the focus is on ideal support for AAS users and so despite the different laws and services in different countries, each interviewee can still offer something relevant. Consequently, it was decided not to exclude on the basis of nationality, but only age and AAS use. The first author contacted each person who had completed the questionnaire and who was willing to be interviewed about their in-depth experience of support (or lack thereof).
Interviews
Semi-structured interviews, covering several topics including: side-effects experienced, advice sought, and support wanted, were conducted (Darlington & Scott, 2002). Participants were adults (age 18+) who were currently using or used non-prescribed AAS in the last six months. Ethical Approval was gained from the Institutional Review Board and from the Addictions Services as required.
A video interview was conducted with a current AAS user as a pilot (van Teijlingen & Hundley, 2001) and as no changes were made as a result of this the pilot interview was included in the final dataset. A wide range of methods for undertaking the interview was offered to the participants, including via the internet (Rodham & Gavin, 2006), and by telephone (Holt, 2010). By offering a choice of method the researchers were hopeful that this would encourage this hard-to-reach population to participate as it allowed them control over the level of anonymity i.e. through the use of pseudonyms and typed answers. However, typed live chat interviews may not allow for the same level of questioning as the verbal interviews, as they are constrained by the medium of typing (Opdenakker, 2014). Participants’ interviews lasted between 45 and 110 minutes. The interviews were transcribed (except for two done via live typed ‘chat’). Participants were offered the opportunity to review the transcripts.
Data analysis
Thematic Analysis was applied using NVivo (Braun & Clarke, 2012). The interview data were coded both deductively and inductively and a coding framework was developed. Three interviews were coded independently by the third author and a secondary coding framework was created to improve the reliability of coding (De Wever, Schellens, Valcke, & Van Keer, 2006). The second author used the framework to code three different transcripts for quality assurance, and no revisions were made as a result of this procedure. To ensure the voice of the AAS user is at the fore, spelling, grammar and wording has not been changed in the ‘chat’ text or interviews. Moreover, direct quotes are accompanied by participants’ pseudonyms, age, and country.
Findings
The study entailed in-depth semi-structured interviews with 23 self-declared AAS users. Participants were male, aged 20–53, with the majority being white, employed and having a college level of education or higher (CSVDisplay Table
Figure 1 identifies six themes and a number of sub-themes on support and information wanted by AAS users.
Figure 1. Themes: information and support wanted by AAS users.
Display full size
Theme 1: specific types of information wanted: managing risks
Theme one identifies the specific types of information wanted based on three sub-themes (see Figure 1). This theme was sub-titled ‘managing risks’ as interviewees acknowledged both risks and ways to mitigate for them:
We all know that what we do can damage us, but we’re not going to stop. Instead, it would make more sense for people to be educated on how to lessen the side-effects and the damage. People will take them irrespective of whether the advice is there or not… Me being one of those people. (Clinton, 20, UK)
The advice on types of substances to use was considered important as many had strong feelings that some substances were more harmful than others. A good example of this was ‘Trenbolone’ as many felt it had too many negative effects. Nine participants talked about the pros and cons of Trenbolone; pros being the dramatic muscle change effects, and the cons included night sweats, shortness of breath and behavioural changes, such as quick to enrage and loss of empathy:
(Trenbolone) made me so indifferent about …my relationship with the people around me. It …was almost like a sense of arrogance that no one else really mattered around me. (Peter, 24, UK)
Some had stopped using it as a result of severe side-effects, but this was not so easy for others:
that’s why I like doing Tren (Trenbolone) so much, because it, it just sucks everything down really well … I don’t know if I’m gonna keep doing it because … it makes me, I’m not empathetic to stuff. (Joel, 34, USA)
The authors did not specially set out to investigate the impact of individual brands of AAS, however, as this substance was referenced numerous times with significant side-effects it might be useful for those working in the field and AAS users to read the quotes included (Supplemental material 1).
Participants wanted information on long-term effects, such information needed to be balanced, knowledgeable and evidenced-based:
where I could actually get some evidence-based advice on it, like from somebody who knows what they’re talking about not some guy who used to be a heroin addict in the needle exchange. Cos, he clearly doesn’t know about steroids… break that down and say, look what you take matters a hell of a lot when it comes to the side-effects you’re …going to get and also the results that you’re going to get from it. (Peter, 24, UK)
Moreover, information needed to be backed up by evidence and academic studies were needed to provide this:
to be clinical trials and moderated usage of it under the supervision of a health professionals… we wouldn’t have to rely on these forums and people using their own bodies to experiment. (Paul, 29, USA)
Theme 2: mechanisms for the communication of advice
Several channels were suggested as to how information on AAS should be communicated (Figure 2).
Figure 2. Mechanisms for communication.
Display full size
One participant suggested a YouTube channel sponsored by a health authority, but others raised concerns that such services were often prevention focussed. The confidence that many participants put in ‘broscience’; i.e. online advice from experienced users (‘brothers’) was pronounced and participants had a number of ways of identifying those who were to be trusted:
I am very selective with who I get my information from and I’ll make that decision on who I think is credible and based on you know are they referencing studies, have they got sort of testimonials of people that they’ve worked with, are they like an authority in that area. (Peter, 24, UK)
There was a call to consider this harm reduction message in a balanced way:
I live in the United States and they refuse to even admit that steroids will put on muscle mass. (Paul, 29, USA)
Without resulting to the use of scare tactics:
…the federal government says a drug, ‘a joint is a pill, is a needle, is a grave’, and by saying that all drugs are equally harmful… that’s the problem about, …being hysterical, is that you lose all credibility for a public health intervention, if your messages are informed by moralism as opposed to public health… take a scientific fact-based, evidence-based approach to these topics and take the moralism out of it. (Hugo, 53, USA)
Moreover, there was a concern that information should be targeted at young people, as they are more vulnerable. For one participant this was the key motivation for taking part in the study:
I was actually ecstatic to participate … you should see the amount of kids that scare me, that are just dumping all these hormones in their body and they don’t give a crap about their health. So anything that’ll, that’ll help people understand …and possibly contribute to harm reduction I’m all about. (Lewis, 37, USA)
Theme 3: specific types of support wanted: medical and emotional
The third theme with associated sub-themes identified the specific types of practical support wanted:
- Medical & practical support
- Access to harm reduction items e.g. needles
- Access to blood panel tests
- Able to give blood
- Access to someone knowledgeable on AAS-related side-effects and refer
- Treatment for side-effects
- Support to stop using
- Need for Testosterone Replacement Therapy (TRT)
- Access to harm reduction items e.g. needles
- Support for the emotional impact of AAS use
Theme 3 – Subtheme 1: medical & practical support
When talking about AAS side-effects and support needed no-one expressed concern about BBVs. However, some, including US participants, wanted more access to NSPs but more for convenience than harm minimisation:
needle services would probably be a good thing, I don’t think it is as necessary as someone that is using heroin or something like that …there is this sort of connotation all steroid users are sharing needles which is really not the case even in the medical literature. (Asi, 28, USA)
One person was less concerned with obtaining free needles and more in having a place to easily dispose of needles safely:
during my first cycle they had sharps bins, but it was very convenient, I used to take them to the gym in a bag and drop them off, but not now. (Del, 35, UK)
In the UK, NSPs offer this drop-off service but many felt a certain stigma attached NSPs:
it would be ideal if that was more available but …once I tried to ask for needles at a needle exchange …they thought I was on heroin… I just don’t want to deal with the system …I’d rather just go and pay for the needles rather than deal with that sort of… judgement. (Powel, 34, UK)
Participants also referenced the need for some sort of service to test the quality of products, raising concerns about using safely and minimising risk.
Most stated that getting blood panel tests done was important and ideally this would include an opportunity to discuss the results with medical professionals. Such support also potentially acting as a preventative measure:
Somewhere you could get your bloods done and actually get someone to tell you what it means, what you need to do…I think it would put a lot of people off for definite if they realised, like your liver toxicity … kinda telling people, look this can have these effects in the long term. (Andrew, 25, UK)
One participant argued that if heroin users had a right to free needles then AAS users had a right to blood tests for harm minimisation purposes:
a government large scale public health problem because from a policy standpoint, …whether it’s heroin users having a right to clean needles or …bodybuilders having a right to medical monitoring of their blood. (Hugo, 53, USA)
Three people expressed a desire to be able to give blood and felt there were more risks from doing this yourself:
taking steroids in general is not overly harmful when taken in the correct way but if you had something like trying to drain your own blood to bring health markers into range that’s whenever harm really starts to happen. (Asi, 28, USA)
And one participant’s solution raised a potential public health risk:
to be on the safe side, I donate every few months just to reduce the haemoglobin and haematocrit. …obviously I have to lie on the form because they won’t take the blood if you have taken steroids. If there was a way … to give blood in an official way then that would be a good idea. (Del, 35, UK)
Many would seek support from a medical professional, including specialists such as endocrinologists, and wanted substances prescribed to mitigate side-effects both whilst on cycle but also for Post Cycle Therapy (PCT). For others the concern was not stopping use but ways to safely reduce usage, continue to use safely long-term and be able to openly talk about issues with a doctor:
I would like to talk to my doctor about this stuff and make sure, I just want to be safe. I don’t want my liver, or my kidneys to get destroyed from these drugs. I wish there was a proper, there was a right steps medically [sic]. (Joel, 34, USA)
However, participants were clear that professionals needed more specialist knowledge on AAS. This perceived lack of knowledge was seen as a barrier, even for participants who said they would be willing to seek professional help to stop:
GPs and whatnot are super busy anyway, but …somewhere to get stuff from …to help counteract stuff, like clomid …If the help was totally anonymous, and also very high in knowledge. This is not the case now. (Andrew, 25, UK)
The anonymity was also important, as some had heard stories about AAS use recorded on medical records impacting on insurance policies and this was also a concern.
There was a request for medical professionals, particularly in the UK, to recognise the need for support for low testosterone, and many users cited TRT as a reason for continuing use. Often describing their frustration with the medical profession’s reliance on set ranges and not taking into account the psychological impact on the individual:
I can’t stop everything that is not an option, because I have low testosterone naturally, I need to be taking something. I was hoping to do this with the NHS, …they’re really useless… if the NHS don’t want to help, I will have to buy that myself online, and take that possibly for the rest of my life. (Del, 35, UK)
Theme 3 – Subtheme 2: support for emotional impact of AAS use
Some participants felt there was a need to consider the wider emotional impact of using AAS, both in terms of reasons for starting use:
People go on steroids for the other reasons so these root causes should be treated first. (Powel, 34, UK)
and the impact of the emotional side-effects experienced on and off-cycle.
The side-effects of PCT were often related to low mood and increased anxiety. There were mixed views on benefits of PCT with some identifying emotional side-effects of using substances to mitigate side-effects:
…is PCT protocol … and I noticed that the clomid had an effect on me actually made me feel quite anxious and it made me feel quite depressed. (Peter, 24, UK)
and others choosing not to use PCT but instead drop to a lower continual dose to avoid the emotional side-effects:
either people are going to use them and go through what is called PCT…or what you can do is TRT and have times when you’re going to use more and that is the choice that I made because it’s generally healthier choice and because you don’t go through these huge swings. (Johan, 36, Hong Kong (French))
However, thoughts were different when it came to mitigating emotional side-effects when on-cycle, in relation to those around increased irritation and anger. The predominant message was that AAS users were responsible for recognising and managing these themselves. Meditation was referenced by one participant as a useful tool to help with this:
I am quite self-aware you see I meditate every day. So, I notice things about myself very, very easily. So, I’ll notice that my patience is a little bit more thin. (Peter, 24, UK)
In terms of types of support, participants recommended a need for specialised counselling, and suggested: education, managing side-effects, dedicated phone lines, psychotherapy, someone to talk to, cognitive-behavioural therapy, and peer support groups.
In terms of overall access to information and support, one participant advocated for specialist centres:
specialist clinics which offer a confidential service are a must when it comes to steroid users. The clinics that I have noticed that operate very well do three things. First of all, they are staffed by highly knowledgeable people who know the effect that steroids have on the body so they’re very quick to identify which side-effects may very well be steroid related and where referrals are appropriate. They offer full panel hormone blood tests which, again, are very useful at identifying potential problems and they are also run by non-judgmental people who are very good at putting people at their ease. (Isaac, 40, UK)
Isaac’s quote highlights the importance of having non-judgemental professionals and this leads into the fourth theme of stigma.
Theme 4: stigmatisation of people who use AAS
Several participants had experienced stigma, mainly at the hands of professionals:
I had a falling out with my one doctor …I was always open and honest … And instead of … talking to me about it, … he would more, more or less berate me about it, you know, so, I never felt that if I did have a problem…, I would have been able to bring it to him comfortably. (Lewis, 37, USA)
Moreover, it was clear that this was a subject discussed openly amongst users who shared stories. This then influenced people who had no negative personal experiences:
the experiences my sort of friends and team-mates have had, with healthcare professionals have been, … entirely negative… I feel like going to a healthcare professional with anything you know would be a last resort. (Alvin, 36, UK)
Others talked about stigma in relation to using NSPs. They felt these services stigmatised them by classing them in the same group as other substances users who used dependence-inducing drugs such as opiates, often themselves reflecting societies’ stigma of such people referring to them as ‘junkies’, and as a result often chose not to use such services.
Theme 5: paying for support services
The fifth theme was a clear willingness to pay for support services, although this was caveated that the cost would need to be reasonable. Many purchased their AAS-use paraphernalia online (and preferred doing so), paid to get blood-tests done privately and one even made it clear he used to donate whenever he got needles from an NSP. One participant felt that although it would be good to have free bloodwork that this might make people’s decision to start using an easier one and felt therefore that payment for bloodwork was an important part of the decision-making process. Another saw AAS use as his choice, and therefore managing the side-effects were his responsibility, and should be at his own cost:
it is my choice to take these steroids … it’s my responsibility, it’s my body…morally I don’t think it’s right for me to put that demand on the NHS. (Peter, 24, UK)
Theme 6: legality of AAS use
The legal status of AAS impacted on support in relation to harm minimisation as people were using them anyway. Some felt that if AAS use was legalised, people would feel more able to seek advice from medical professionals and be able to buy from pharmacies which would reduce risk, as products would be of a good quality and not adulterated:
I would like to see it legalized so there would be like a standard, for example because I know a lot of people have fucked themselves up using somebody’s homebrew that they gave them infections. (Lewis, 37, USA)
Your advice and your support and your sources and your education is driven underground and that is a problem. (Peter, 24, UK)
It is worth noting that AAS users may have an ulterior motive in that by using AAS they may put themselves on the wrong side of the law. Moreover, not all participants agreed and one suggested that AAS should not be legalised:
I just think there should be a way where it can remain, I guess banned to the public but at least allow there to be clinical trials and moderated usage of it under the supervision of a health professionals. (Paul, 29, USA)
It was acknowledged that the legal situation affects public health polices, and here it was clear that few felt that the policies in place provided the necessary support for people who use AAS. The idea that people’s experiences were unique and could not be applied generically to use was referenced throughout the interviews. One participant summed up individualisation as a need to understand the motivations and circumstances of the individual:
when we talk about anabolic steroids, I think we have to say, ‘in what context, by whom and from whom, and for what purpose, … and under what circumstances?’ …We need to get the right on a policy level, we need to get the right kind of help, for the right kind of sub communities and not have a one size fits all approach. (Hugo, 53, USA)
Discussion
Harm minimisation
Many of the wishes for support services in this study are aligned to some of the services already supplied in a range of western countries, and others have been recommended by previous studies e.g. need for PCT advice (Griffiths, Henshaw, et al., 2017), and specialised harm reduction interventions for AAS users (Kimergård & McVeigh, 2014). A number of concerns raised in this paper have been previously raised in the literature including: risks of self-phlebotomy (Brennan, Wells, & Van Hout, 2018), stigma from health professionals (Griffiths, Murray, & Mond, 2016; Simmonds & Coomber, 2009), a risk of poor quality substances (Abbate et al., 2015; Cho et al., 2015; Coomber et al., 2014). The current public health focus on harm minimisation treats AAS users as ‘another drug user’ which could be another reason as to why AAS users prefer to avoid public health services. This study echoes previous studies highlighting that AAS users are reluctant to engage with health services (Zahnow, McVeigh, Ferris, & Winstock, 2017) but wish to do so. Desires such as to discuss the effects of use with medical professionals; to see more research-led studies and evidenced-based advice, alongside the willingness to pay for services potentially does set them apart from the more traditional users of such services. This desire for evidence-based advice is not surprising as this population has a high level of ethnopharmacological knowledge (Monaghan, 2002), which also goes someway to explain why participants were advocating for more human-based scientific research.
The public health focus on BBV risk aligned to AAS use is not something that the participants recognised, which raises the question why this focus? Participants talked about accessing NSPs and receiving information and needles; however, participants also spoke of stigma attached to this. Moreover, AAS users’ practices when injecting differ from those who inject illicit substances (e.g. heroin); the former tend to use swabs, do not share needles or vials and rarely re-use needles (Underwood, 2019). The majority of harm minimisation advice tends to be through NSPs and Van de Ven, Zahnow, et al. (2019) argue that this may miss an entire group of people who only use AAS orally. It could be argued that those working in this field, know that they are only likely to be funded if the focus is on wider public health issues i.e. BBV prevention, however, this is not helpful, if that very focus is a barrier for some people accessing the service, and in this study less than half of the UK participants had accessed NSPs.
Support services
Based on the wishes of the participants from this study the authors have outlined the services that it might be useful for a specialised steroid clinic to provide in order to meet the wide range of potential needs for people who use AAS (Figure 3).
Figure 3. Suggested services for specialist IPED/AAS Clinics.
Display full size
This study highlights that first and foremost AAS users wanted medical support for side-effects and previous studies have shown that access to medical examinations can help AAS users feel safer (Kimergård & McVeigh, 2014) and consequently it is worth including this provision as part of any specialised steroid service. Another potentially useful addition would be access to advice on nutrition and exercises, as some participants acknowledged that they started too young, and with the right advice on diet and exercise may not have started using AAS so early. Furthermore, offering courses or sessions in mindfulness and meditation might be beneficial as some participants stated they already used such techniques to manage some of the emotional side-effects. Users wanted professionals to have personal experience, which is an unrealistic expectation; however, such wishes could in part be met by the setting up of peer-support groups. Services could require service users to make a donation, as this could provide services with a way of funding potential outreach services e.g. peer-led needle distribution (Kimergård & McVeigh, 2014), reduce stigma, and align with their value of taking responsibility for their use.
Considering the recommendations for steroid clinic services (Figure 3), potentially the most controversial of these could be offering testing for quality of substances. However, evidence shows that much of the AAS sold is adulterated (Coomber et al., 2014) and testing of illicit recreational drugs is now part of many modern harm minimisation strategies (Brunt, 2017). AAS users were understandably concerned about drug quality and some even paid for testing through online companies as part of their personal harm minimisation strategy. This study also found evidence of AAS users not only wishing to give blood as a harm minimisation technique but also using blood donor services, and not disclosing their AAS use. Self-phlebotomy is something that health professionals need to be aware of (Brennan et al., 2018), but it is also relevant to note there could be risks from public blood donation too.
Interventions should be targeted at people who use AAS to improve their health outcomes (Bates et al., 2018) and the majority of interviewees supported this perspective, feeling that a focus on stopping use was not only unhelpful but also unrealistic. This is relevant as users noted that stopping use would not be possible due to their concerns about the negative effects of having low testosterone levels (due to age or AAS-use). The concerns around low testosterone causing depression and impacting on quality of life, appear to be one area within this sub-community that deserves further attention. It is important for medical professionals to be well informed about IPED use not just to support physical health issues but also those experiencing low mood when off-cycle (Griffiths, Henshaw, et al., 2017). The idea that medical practitioners are not taking the impact of low mood among men seriously regardless of the cause is relevant because research suggests that there is a disparity with diagnosis of depression in gender, with medical practitioners less likely to diagnose depression in men (Salk, Hyde, & Abramson, 2017). The time is right to focus support services on psycho-social aspects of use as there is a wider societal movement to de-stigmatise mental health issues for men. Thus, further research into the emotional experiences coming off-cycle and behavioural changes such as increased irritation or anger, and loss of empathy when on cycle would be useful to inform the provision of effective support services.
Timing of intervention is important and it is key to consider transitions in people’s lives (Bates et al., 2018), such as reaching an age where testosterone levels fall naturally or deciding to change your body shape and/or joining communities where AAS use is normalised. This supports participants’ calls for credible youth intervention, understanding that saying no is unrealistic. Any intervention needs to be tied to motivation (Boardley, Grix, & Dewar, 2014) and this study found that there was a notion that users wanted to be understood in relation to their personal motivations for use. Therefore, the authors suggest a need for further research into how motivations for use might impact on the type of support AAS users want across the lifespan.
Mechanisms of communication
In relation to the provision of information and support, the ‘one-stop-shop’ service suggested could be an answer but does not address all the issues raised (possibly due to funding or policy issues). To do that it would need to be provided in conjunction with a range of other services via other sources, such as the online communities. Improving the provision of information through modern media is important to prevent harms and reduce the influence of those with vested interests (e.g. suppliers) (McVeigh, Evans-Brown, & Bellis, 2012) and using social media and online networking has been recommended (Glass et al., 2019). The authors add their voice to many before us (Bates et al., 2018; Glass et al., 2019; Griffiths, Henshaw, et al., 2017; Kimergård & McVeigh, 2014; Salinas, Floodgate, & Ralphs, 2019; Underwood, 2019; Van de Ven et al., 2019) who are advocating for a review of public health initiatives with a view that they look to utilise more innovative methods of dissemination via peer networks.
Underwood (2019) advocates engaging the experienced users, the social influencers, to promote harm-reduction services, and reminds us that when we publish research on AAS we are often speaking directly to the community, as users seek out evidence-based knowledge and this was clearly evidenced in our interviews. Furthermore, it was not just the channels that were seen as important, but that the advice was balanced. Previous studies have advocated the need for professionals to acknowledge the efficacy of steroids (Griffiths, Murray, Mitchison, & Mond, 2016) and this was something that was desired and a more individualised approach is needed ‘based on thorough assessment of risk behavior, lifestyle and underlying health’ (Zahnow et al., 2018, p. 111). Our interviews highlight the broader necessity to reconsider the current support approaches, moving away from conversations about needle sharing and stopping use; to conversations about wider long-term harm minimisation and practical advice including ‘how to inject’. In this study most participants were self-taught and used online instructions or videos to support this. There are videos by professionals on safer injecting (Public Health Wales, 2019). Perhaps increasing the publicity of such resources and involving experienced users in such initiatives might help ensure that the ‘right’ information is being shared to help people minimise risks, with NSPs also offering this guidance.
Removing barriers
Removing barriers to access is key. The AAS users readily shared information and stories, and therefore if one person has a poor experience with a professional that this is shared widely within the community. Professionals need to be aware of both this network and also acknowledge how harmful their judgements can be with regards to people accessing support. What is surprising around the concept of medical professionals needing to be both credible and non-judgemental is that this information has been available in the academic literature for a long-time (Grogan, Shepherd, Evans, Wright, & Hunter, 2006; Simmonds & Coomber, 2009). This raises the question of what more needs to be done by the academic community to help encourage the academic evidence to be incorporated into policies and practice.
Identity as an AAS user
One central idea integral to each of the six individual themes identified, is identity. It is clear from this study that AAS users do not identify themselves as ‘illicit drug-users’ in the sense they clearly want to distance themselves from people who are dependent on heroin or cocaine, which echoes the findings of other studies (McVeigh et al., 2012), and although there is evidence of poly-drug use within this community (Begley, McVeigh, & Hope, 2017; Cornford, Kean, & Nash, 2014), only one interviewee talked of using any other illicit drugs and participants were clear that they saw their use as different to that of other users. Moreover, some of those who saw their use as TRT, no longer saw themselves as AAS users but instead just saw it as a form of self-prescribed medication. There is a need to develop ‘better understandings of the health and wellbeing issues’ for AAS users in order to ‘design more credible and engaging policy responses’ (Moore, Hart, Fraser, & Seear, 2019, p. 15), and the ‘one-size-fits-all’ attitude of public health information literature is inadequate, as it does not acknowledge the diversity of people who use AAS (Underwood, 2019).
Strengths and limitations
To our knowledge this is the first study to directly ask AAS users about the ideal types of information and support they want. This study may not represent all types of AAS users; however, there were similarities found across geographical regions and the age ranges which suggest a level of diversity and consequently sheds light on the types of information and support wanted. Participants may have under-reported the severity of side-effects or need for support because of shame or fear that such studies may mean an increase in attention from authorities into steroid use, which could negatively influence the legal situation. This study acknowledges that there may be geographical/legal differences dependent on country of residence. The study also did not look at the specific information and support needed for each of the different substances and associated brands, however, it did find that one AAS, namely Trenbolone, was referenced as having problematic side-effects and this is a potential area for further research. This study also recommends that specialised steroid clinics are potentially a good way of providing support to AAS users, however in line with previous studies (Kimergård & McVeigh, 2014; Tighe et al., 2017), a limitation is the lack of evidence-base concerning the impact of such services (often due to policy changes or funding limitations on such services) and therefore there is a need for evaluation of the effectiveness of such services particularly aligned to harm minimisation for this population.
Conclusion
There is a need to encourage professionals to share good practice not only with other professionals but more widely within the AAS community and we advocate that any approach be person-centred. Moreover, governments need to take note of the wealth of building evidence for such a personalised approach within both the AAS user and academic communities. We would advocate that professionals continue to take a harm minimisation approach and investigate ways to engage influencers within the community with harm minimisation activities, as well as try to measure the impact of any specialised AAS services. We advocate for more consideration being given to the types of support for men who are experiencing depressive symptoms and those with psychological complications surrounding AAS use. We support the development of specialized steroid services as part of public health initiatives and suggest they consider ways for AAS users to give voluntary donations or be charged a nominal fee for specialist harm minimisation paraphernalia. Emphasis needs to be placed on ensuring services are delivered by knowledgeable, non-judgemental professionals who take a neutral view of AAS use and understand the complex motivations for use and the benefits.
Acknowledgements
Thank you to the participants for taking part in this study. Thank you to the reviewers for their comments. Vincent Marmion for his support with the figures.
Disclosure statement
No potential conflict of interest was reported by the authors.
Supplemental material
Support for non-prescribed anabolic androgenic steroids users: a qualitative exploration of their needs
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Appendix 1
Self
-
reported effects of using Trenbolone
This study did not seek to find out the individual effects of specific brands or types of AAS
however, one substance ‘Trenbolone’ did stand out as something that could have very
beneficial effects but was also
particularly problematic to use, in relation to unwanted
behavioural side effects.
Use
Quote
Effects on
Cycle
‘compounds cause behavioural changes like Trenbolone so I no longer use that steroid’
(Nick/USA/50)
‘Tren
has caused heightened aggression. If estrogen [sic] spikes I can get moody but knowing
my dosages and blood levels I can actually manage moods more’ (Rod/Australia/39)
‘Trenbolone makes me very short tempered, aggressive and my mind is filled with visci
ous
[sic] and violent thoughts’ (Don/UK/39)
‘
that is the one compound that does make me raise an eyebrow, but just because of the people
that have come back to me after using it, and said, that I can’t ever use that again, I went crazy’
(Robert/Spain/34)
‘
I never got on with Trenbolone. Trenbolone was one steroid that did make me irritable and did
make me agitated.’
(Isaac/UK/42)
‘I did use one compound: trenbolone, for a while and I had every negative side effect with it
imaginable with that; I had shortness of breath, I had flushing, I had night sweats, I had quick,
quick to enrage.’
(Hugo/USA/53)
it made me so indifferent abou
t like my relationship with the people around me. It's like it was
almost like a sense of arrogance that no one else really mattered around me’
(Peter/UK/24)
‘
I'm running Tren
right now, and you know I get the full nightmares, I get the extreme sweats,
the insomnia is pretty bad... I don't forget a single bit of the, the terror of the nightmare.’
(Lewis/USA/37)
‘Tren is not the best drug to take, ...I am not emotional but Tren’
s not a good drug if you are
not very in control of your impulses and your emotions and I am on Tren right now but very
small doses of it because I've taken it before, and like man it just, it just makes you so
depressed for no reason... I'm terrified of g
etting fat again... so that's why I like doing Tren so
much, because it, it just sucks everything down really well ...I don't know if I'm gonna keep
doing it because ...I'm not empathetic to stuff... I don't like the person that I am, when I'm
doing it.
’
(Joel
/USA/34)
‘
I am on trenbolone and that could cause, actually that could cause problems right now.
Definitely it's
easier to get angry and Yeah, lose control that’s for sure. Especially on
trenbolone because that's a very specific compound, lots of friends and guys at the gym would
say the same thing’
(Lev/Canada/32)
‘I used it for a period of around eight weeks and
I didn't get any sort of heightened aggression
which some people find I didn't you know I got night sweats, it reduced the amount of sleep I
needed it seemed and but it made me so indifferent about like my relationship with the people
around me. It's like
it was almost like a sense of arrogance that no one else really mattered
around me’
(Peter,24,UK)
‘I am having occasionally light night sweats, occasionally, slight er acid reflux, but no problem
at all. It is very easy...um, with the Tren, I noticed
initially a slight increase in irritability when
I am driving, so you know, swearing at other drivers, you know, in my head sometimes, but
that has passed now’ (Del,35,UK)
‘Very low mood after using trenabol’ (Grant/UK/29)
After a Cycle
‘First cycle, off Tren I was very insecure’ (Jason/UK/40)
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