Experiences of participation in a longitudinal cohort study of people who inject drugs in Victoria, Australia

Abstract

Aim

Longitudinal cohort studies are important for understanding the social and health trajectories of people who inject drugs. Little research exists, however, about the motivations, challenges, and experiences of participation in these studies.

Methods

To address this gap, we conducted in-depth interviews with participants of an open-ended natural history longitudinal cohort study (SuperMIX) and with fieldworkers who collect the data for this study. Interviews were audio-recorded, and data analyzed thematically.

Results

Research findings revealed several motivating factors that encouraged participants to get involved in and stay in the study including financial reimbursement and the opportunity to contribute to a study aiming to improve the lives of peers. Many participants discussed their appreciation of the kindness and respect they were afforded by fieldworkers, and the advocacy role fieldworkers had undertaken with them. While some participants described challenges responding to some questions, there were also expressions of finding the experience therapeutic.

Conclusion

Findings provide learnings for future studies and highlight how participation in longitudinal cohort research can provide an opportunity for on-going engagement that affords participants not only a chance to share their experiences, but to contribute to knowledge production and achieve clarity about their own experience.

Keywords:

• People who inject drugs
• longitudinal cohort studies
• research participation
• quantitative research methods

Background

Longitudinal cohort studies of people who inject drugs have been important for extending knowledge of the population-level health and social trajectories of people involved in injecting drug use (DeBeck et al., 2017; Kral et al., 2015; Rafful et al., 2018; Riley et al., 2016; Scott et al., 2017). These studies provide important evidence for informing policy and practice responses to address inequalities in the mental, physical, and social health outcomes of people who inject drugs. Few studies, however, have examined participants’ who inject drugs lived experiences of their long-term involvement in cohort studies.

Previous studies have explored the motivations of people who inject drugs to participate in qualitative research (Abadie et al., 2018, 2019; Drainoni et al., 2019; Parkin, 2017). Literature also exists about the motivations and barriers of involvement in randomized control trials (Jaffe et al., 2021; Marshall et al., 2022). Furthermore, others have examined views on participation in research for people who inject drugs more generally, but these studies have either collected this data via surveys (Fry & Dwyer, 2001; Jaffe et al., 2021), recruited participants who are not currently involved in research (Barratt et al., 2007; Collins et al., 2017; Mirzazadeh et al., 2020), or the types of research involvement of participants is not specified (Kost et al., 2011). Few, if any studies, to our knowledge have conducted in-depth interviews with participants currently involved in longitudinal cohort studies, and little research or consideration exists exploring the factors that influence on-going participation for people who use drugs in ‘non-intervention’ observational research (Barratt et al., 2007). Understanding these factors is important for both improving study retention and ensuring positive experiences are optimized for study participants.

We address this gap in the literature via the analysis of in-depth interview data collected from participants of a longitudinal cohort study (SuperMIX) of people who inject drugs in Victoria, Australia, and from current and previous fieldworkers who collect study data. We aim to provide important insights and understandings from these data that can guide the design and implementation of future studies.

In the following sections we describe the SuperMIX study to provide context for our findings, followed by the methods used to collect and analyze qualitative data. Next, we present our findings via five themes, followed by a discussion of the implications of our study.

The SuperMIX study

SuperMIX is Australia’s largest longitudinal cohort study of people who inject drugs. It was established in 2008 with the aim of describing the natural history and longitudinal trajectories of injecting drug use, including risk and protective factors of adverse health outcomes, cessation of and relapse into injecting drug use, and the impacts of health service access (Van Den Boom et al., 2022). Up to July 2019, 1,303 individuals had been enrolled in the cohort and 4,835 interviews had been completed (Van Den Boom et al., 2022).

SuperMIX study eligibility includes injecting heroin and/or amphetamines at least once a month for six months prior to recruitment, residing in Melbourne or Greater Geelong, Victoria, and having the capacity to provide informed written consent. Recruitment into the study took place via street-based outreach in locations in and around prominent drug markets.

Comprehensive data is collected via an annual quantitative questionnaire survey (herein referred to as ‘the survey’), conducted face-to-face (excluding during the COVID-19 pandemic when interviews were conducted over the phone). Venous blood samples are also collected from participants, which are subsequently tested for hepatitis C (antibody and RNA), hepatitis B virus and HIV. The survey includes questions about participants social lives (e.g. income, housing, employment status, children in their care); mental and physical health status; health and social service use; drug purchasing and use; sexual health; injecting behaviours; and criminal justice involvement (Van Den Boom et al., 2021). The survey is based on health screening tools such as the PHQ9 (a tool to assess individual depression levels) and the SF-8 (which measures health-related quality of life) (Van Den Boom et al., 2022) A range of administrative data is also linked to participants’ survey responses, including data on access to universal health care (e.g. pharmaceuticals, medical practitioners), alcohol or other drug treatment or mortality (Van Den Boom et al 2021). Survey responses are captured via scaled tools, ‘yes/no’ and numerical responses.

SuperMIX participant characteristics

The average number of years SuperMIX participants have been involved in the study is six. Two thirds (67%) of participants are male and one third (33%) are female. Just over one in ten (12%) identify as Aboriginal and Torres Strait Islander, and 17% are born overseas (van den Boom et al., 2021). The study sample are generally characterised by low socio-economic disadvantage. At their most recent interview, almost nine out of ten were receiving pensions or government benefits (86%) and were unemployed (87%) (van den Boom, 2022). One in three (36%) were homeless or in unstable housing and two thirds (66%) had ever been incarcerated (van den Boom, 2022). More than half (52%) of SuperMIX participants report experiences of moderate to severe depression (Abdelsalam et al., 2021). Almost half had ever experienced a heroin overdose (46%), and ever been diagnosed with hepatitis C (45%) (Hill et al., 2022; van Den Boom, 2022).

All fieldworkers employed to undertake interviews with SuperMIX participants have qualifications and/or backgrounds in social service professions (such as social work, alcohol and other drug counselling, or community outreach work) to ensure they are equipped to undertake the interviews skillfully and with care, sensitivity, and non-judgement. The processes and practices of fieldworkers conducting interviews is guided by a SuperMIX Standard Operating Protocol to ensure all mechanisms are in place to protect the safety of fieldworkers and participants if challenging events arise during the conduct of interviews. Given the sensitive nature of topics within the interview schedules, processes are in place to mitigate the risk of participant distress, and to manage this distress if indeed it does occur. Prior to participation in initial interviews, participants are alerted to the content of the survey, and are given the option to skip questions or terminate the interview if they feel uncomfortable; as a result, in some cases interviews have been suspended before all questions have been asked. All fieldworkers are well-connected with alcohol and other drug (AOD), and mental health services and supports, to which participants requiring or requesting further information or counsel can be referred. Furthermore, all participants are provided with information about how to contact the research team if they have any issues that arise after interviews are completed.

In accordance with standard practice in AOD research in Australia, participants are reimbursed AUD$40 cash for their time and contribution, at the conclusion of each interview. During periods of SuperMIX study recruitment, snowball sampling is used, and participants are reimbursed AUD$20 if they recruit an eligible friend/peer into the study.

SuperMIX study retention is relatively high; around two-thirds of participants have completed at least one follow-up interview in the two years prior to July 2019 (van den Boom et al., 2022).

Methods

Qualitative methods were used to conduct the study. With the aim of capturing a balanced perspective, we conducted in-depth semi-structured interviews with participants of the SuperMIX study and fieldworkers who collect data from participants. Ethics approval for the study was obtained from the La Trobe University Human Research Ethics Committee (#HEC20461).

Recruitment into the qualitative study

SuperMIX participant eligibility included having completed a SuperMIX survey questionnaire within the last 3 months, with the aim of optimizing recall to enhance response accuracy. Participants were recruited into the study via convenience sampling, which occurred in-person at four different locations where fieldworkers administer the SuperMIX survey. For participants who were at these locations to complete their annual survey, before or after completing the survey fieldworkers gave participants (verbally) brief information about the qualitative study. Those who were interested were introduced to the qualitative study researcher/s to explain the study in more detail and gain their consent to participate. Three participants who were invited to participate, chose to decline. Two participants were recruited into the study who were at the fieldwork locations for other purposes but had completed the SuperMIX survey within the last three months.

Fieldworkers were purposively recruited to ensure a breadth of experiences and perspectives were captured, including females vs. males and those who were currently employed vs. past employees.

Data collection

Fifteen SuperMIX study participants were interviewed in private locations of their choice, including private rooms in needle and syringe services, on park benches away from other people, and in the fieldwork van when it wasn’t being used for SuperMIX interviews. Interviews focused on participants’ motivations for initiating and maintaining involvement in the SuperMIX study, benefits and challenges of participation, researcher relationships, and how the survey questions made them feel. Participants were reimbursed AUD$40 for their time and contribution.

Additionally, four SuperMIX study fieldworkers with varying levels of experience and years in the role were purposively selected to participate in interviews. These interviews were conducted via video teleconference and were focused on understanding views and experiences of conducting survey interviews, including relationships with participants, their role as a fieldworker, and perceptions of experiences of SuperMIX study participants.

Data collection occurred between December 2020 and August 2021. Written consent was obtained from SuperMIX study participants and verbal consent was obtained from fieldworkers. All interviews were audio-recorded and transcribed verbatim by members of the author team (BB, RN) and interview transcripts were de-identified to protect participant anonymity.

The analysis process involved reading and re-reading transcripts to familiarize with the data. Transcripts were managed and organized using NVivo qualitative data analysis software (QSR International Pty Ltd., 2018) and data were analyzed thematically (Braun & Clarke, 2006). Preliminary broad codes were created based on topics within the interview schedule, followed by an inductive process of identifying patterns, themes, and inconsistencies within in the data, and coding extracts of transcripts to these. Final themes presented in this paper were agreed upon by all authors. All participant names have been replaced with pseudonyms to protect their identity.

Findings

SuperMIX study participants (herein called ‘study participants’) included eight males and seven females aged between 35 and 60 years (mean age 43 years). Most participants (n = 12) were Australian born, including four who identified as Indigenous. Around half (n = 8) were recruited into the SuperMIX study less than five years ago and six had been involved for at least ten years. Participants had completed the SuperMIX survey between 3 and 13 times, with an average of six interviews completed.

Fieldworkers interviewed included two men and two women with 5–13 years’ experience undertaking surveys with SuperMIX study participants. One participant was no longer involved in the study.

Research findings are presented via five themes: (1) financial incentives; (2) acts of altruism; (3) acts of kindness; (4) acts of advocacy; and (5) survey questions: challenging and therapeutic.

Financial incentives

Although study participants expressed multiple motivations for getting involved and staying in the study, more than three quarters described the AUD$40 incentive as a key factor that influenced their continued involvement. For a couple of participants (n = 3) this was described as their primary motivating factor for staying in the study, however most (n = 7) described it as a bonus on top of other motivations. Emily, for example said:

You get paid forty bucks, it’s worth it, you know. […] It does help, I mean if it sources you know, bread, milk, or dinner—or whatever you know. Every bit helps. (Emily, female, 38)

Three study participants who had been involved in referring peers into the SuperMIX study and had received monetary compensation for doing so also described how the AUD$20 was a motivating factor, as highlighted in Toms comment:

A really good incentive that the Burnet studies has as well is the referral cash […] I’d get like a twenty-dollar referral thank you for bringing someone else [into the study] kind of thing. I think that’s pretty cool. (Tom, male, 38)

Around a quarter of study participants (n = 3) described how the cash was particularly appreciated, if they were completing the interview at times when they were in real financial stress. For some, the cash meant they would have money for bare necessities such as food or to pay an overdue bill. As Phillip described:

Well, some days I’m really broke and other days I’m not. So, the days I’m really broke, it’s really important … the money … and then the days when I’m not, I mean it’s okay but it’s not the driving force. (Phillip, male, 60)

Given many participants in the SuperMIX study experience financial stress and most have current drug dependency issues, non-surprisingly a few participants (n = 2) described how the cash sometimes supported their drug purchasing activities. For example, Dave said:

[Money is a motivator] ‘cause I can get on [purchase drugs] when I am sick […] It’s just about the money really, yeah. (Dave, male, 46)

All fieldworkers described appreciating the fact that they were able to provide compensation to participants in the form of cash, given their understanding of the financial strains they knew many participants experienced. This act of reciprocity, however, was described as representing a challenge for fieldworkers at times. All described experiences of being approached at times, by SuperMIX participants who were not due for their annual interview, but despite being told this was the case, expressed their ‘desperate’ need for the cash, and thus asked if they could still do an interview. In these instances, fieldworkers described being forced to turn participants away, which they often felt ‘harsh,’ because they knew how much participants needed the money:

[Many participants] need the money to be able to buy a shot of heroin, because they’re in withdrawal, and they’re sick. And so [they need money] to stave off that sickness. And reminding people that that’s kind of not my responsibility is kind of harsh […] You know, I get stressed about that for sure … when people are just constantly at you for 10 or 20 dollars, you know, to just kind of stop them feeling sick. (Fieldworker 4)

Acts of altruism

For more than three quarters of study participants (n = 11), financial reimbursement was described as an important incentive for getting into the study and staying in study initially. However, for most participants (n = 10) their more recent involvement in the study was overwhelmingly one that that was described as motivated by altruistic purposes. The desire to benefit someone other than oneself was often expressed as the reason for their ongoing involvement in the study, as highlighted by Kim and Aisi’s comments:

When I first did it, I did it to get the money but when I started to know what it was really about, about them researching and trying to help people like us … that’s when I yeah … I would do it even without the money now. (Kim, female, 37)

Once we actually knew what you guys were doing, ahh, ok, the money was like a bonus yeah—but if you can help out someone else why not? (Aisi, male, 39

Lewis described how the opportunity to make a positive impact in the lives of others through providing information about his own experience was integral to his involvement in the study:

I suppose … not to sound corny but [I stayed in the study] to do the right thing—do the right thing and contribute something back. (Lewis, male, 48)

Beth also described how once she understood the importance of the study and the potential it had to improve future outcomes for people who inject drugs, that her motivation to undertake the survey was increased:

At first, I was probably more apprehensive to answer [questions] but then having learnt how important some of the research is, like especially you know, even the availability of things to people […] where different people need different things, what services need to be [available], where it’s important … like then [I’m] all the more for it. (Beth, female, 36)

All fieldworkers had also observed altruism as a motivating factor for many study participants, as highlighted in the following comment:

I've had a few participants talk either to this directly or around it … they value the opportunity to participate in research… it’s almost like a redemptive thing. (Fieldworker 1)

Acts of care

A feeling that fieldworkers genuinely cared about their wellbeing, beyond that of them being a study participant completing a survey, was described as motivating factor for being involved in the study for most participants.

Around half of study participants (n = 8) said the approachability and willingness of fieldworkers to chat with them informally (when not completing the survey)—made them feel valued. A couple of participants (n = 2) described how this was particularly appreciated because it had not always been the case with other workers from other health services to which they were connected. For example, Mike said:

I also think the personal touch sort of thing, with you guys, it’s immeasurable. […] There are some workers at [another service]—if you see them down the street on their lunch break, you get the impression that they don’t want to [say hello] … whereas […] I’ve never gotten that with anyone associated with this survey. (Mike, male, 44)

A feeling of not being judged and feeling respected by fieldworkers was also described as having encouraged their participation in the study:

[The fieldworkers] treat you normal, they don’t discourage you because you‘ve been to jail, or you do drugs, or anything like that … they treat you as normal, yeah. A lot of places you go, you get treated different. (Kim, female, 37)

A couple of study participants (n = 2) spoke of their appreciation that they could discuss with fieldworkers, personal challenges that were going on in their lives. For example, Mike described how when he was feeling ‘down’ on himself, conversations with fieldworkers gave him ‘hope’ and optimism to keep going:

Some people just need to talk … and um especially what I was going through at the time before, and during when I became homeless … I was so down with myself […] the importance of being told that ‘you’re not a fuck up’ […] ‘don’t let that affect you, don’t concentrate on that’ […] even when the negative things are going on […] It’s good to have hope and it’s good to have people who understand. (Mike, male, 44)

Kim also described her appreciation of fieldworkers, as individuals who really cared about her wellbeing. The benefits of having someone to talk to about the challenges in her life was considered particularly important, given it was an opportunity she said she rarely received:

Someone could be really really troubled and you could talk to them about getting help you know, which youse do, you know I’ve seen it … youse have done it for me—so it’s not just about the interview cos youse take more involvement with us than just the interview. How many times have you bought me a coffee, sat down and talked to me. Do you know what I mean? Like we wouldn’t get that, we wouldn’t get that from anyone. (Kim, female, 37)

A few study participants (n = 3) described feeling comfortable and trusting of fieldworkers because the same fieldworker had built rapport with them through multiple interviews over many years. For example, Phillip said:

Just as soon as I saw [the researcher] I remembered you know, previous times, and um, yeah you just feel more at home, more comfortable. (Phillip, male, 60)

Despite all study participants expressing that they felt fieldworkers genuinely cared about them as individuals, one participant also explained how, because the fieldworkers had not ‘been in [her] shoes,’ they could not fully understand her situation:

I don’t get judged … they kind of understand where I'm coming from, but they don’t … they haven’t lived the same life that I have, so they’ve never been in my shoes, so they wouldn’t understand—but I know they care. (Amy, female, 40)

Although the responsibility of being a caring person in the lives of study participants was described by fieldworkers as a ‘natural’ process, it was also described as difficult at times. All fieldworkers expressed the toll of having to bear witness to the personal challenges study participants faced, via hearing responses to survey questions and/or conversations before or after interviews. One fieldworker, for example, said:

[Many participants are] vulnerable, very unwell [and] putting themselves under a lot of risk. And just watching people sort of go around the cycle [of AOD use], the merry go round, you know, you see some people go to rehab and they come back, and they’d be amazing. … But then … they would be, you know kind of back to where they were. So, you know, a lot of grief. So, it’s bearing that burden, I guess. (Fieldworker 3)

Another fieldworker described the emotional challenge of watching things ‘fall apart’ for a study participant who they had known for a significant number of years:

I have a 5–6 year [researcher] relationship with this guy now, and things have kind of fallen apart for him in the last 9 months … and sort of watching that happen [after] offer[ing] a bit of advice on the side … [and] him not really following through on things […] which is completely his own choice [but] it’s tough and it’s sad to watch that … so I think that’s probably the hardest part of the job […] just watching people living really tough, hard lives. (Fieldworker 2)

Acts of advocacy

Some study participants (n = 4) described how their trust and rapport with fieldworkers was built through fieldworker acts of advocacy, such as referring or accompanying them to health services or helping them make a self-referral.

Motivation for involvement in the study, for some, was related to their own health outcomes. For example, some described being given a referral to health services to commence the new hepatitis C treatment, as highlighted in Tom’s comment:

[I stayed in the study because] I could possibly have this new treatment, ‘cause I’d known friends who had previously had hep C with the old interferon treatment [which had side effects] … [and] what was being promised [by Burnet] was an almost side-effect-less treatment (Tom, male, 38)

Paul, who had been homeless, also described how the additional support received from fieldworkers, to help him find a place to stay when he was homeless, made a huge difference to how he felt about the fieldworkers:

Especially when I knew that you would send me in any direction and if I didn’t have anywhere to stay, you’d find me somewhere to stay, drive me to [suburb]—who does that? You know what I’m saying? Youse are like angels mate. (Paul, male, 54)

Acts of advocacy, however, sometimes raised challenges for fieldworkers in relation to balancing this role with that of their research role. One fieldworker for example, raised the challenges of balancing the ethical importance of providing advocacy support to study participant against the potential that doing so may impact on future research findings:

If somebody asked [for help] then I’ll put out as many suggestions I can think of and [I] might help them make a phone call or two […] From a purely research point of view, participation in the study shouldn’t impact on their trajectories through life, but obviously, you know, that’s pretty hard to avoid. (Fieldworker 1)

Fieldworkers spoke about the ways these boundaries often seemed blurred for study participants too, including confusion resulting from the additional advocacy work they sometimes undertook for participants and participants difficulty conceptualizing what a ‘researcher’ role is:

Some people thought I was a GP. Some people thought I was a nurse. Some people often thought that we were providing a service out of the van. So, they might have even […] kind of perceived me like sort of their worker. (Fieldworker 3)

Whilst all fieldworkers were aware of the importance of maintaining ‘strong boundaries’ for ethical purposes, all felt strongly that some appropriate ‘blurring’ of boundaries was also an ethical practice that was required of them as fieldworkers—to show care and concern and do something when they could, to help, when it was needed. It was also considered an act that was essential for maintaining the engagement of participants. For example, one fieldworker said:

It’s important to have strong boundaries between your role as a researcher, and what your role is, outside of that. And I guess, in some ways, it’d be fair to say […] that the blurring of those boundaries is essential to maintaining engagement with our participants. (Fieldworker 4)

The survey questions: challenging and therapeutic

When asked how they felt when completing the survey, participants provided a range of responses. Around one third of study participants (n = 5) described the challenges they faced answering scaling questions without the opportunity to provide more information – a concern that was also raised by fieldworkers. More than half (n = 8), however, described the process of completing the survey as therapeutic, including many who also found some questions challenging.

Jessie expressed how difficult it was to provide accurate responses to some questions because there was no opportunity to expand on her single answer response:

It’s hard to be honest with [the mental health questions] I think [the scaling questions are] good because they’re impersonal. But there has been times when I’ve answered it and thought, well I wish I could say ‘but blah blah blah’. (Jessie, female, 54)

Martha explained too, how answering the scaling questions authentically was challenging, and how this created concerns about how she would be perceived if her responses were not ‘correct’:

That’s difficult for me [to answer questions on a scale]. I don’t know if that’s difficult for other people but that was difficult … I don’t know. ‘Cause I kind of want to say, I want to answer that question, like ‘how do you see your future?’ You know, I’ve no idea honestly—like one to eight … I can’t really. I don’t know. And there’s a couple of questions where I just answered like, you know, in the middle because I wasn’t sure, I wish I could remember […] like you just don’t want your answer taken wrong. (Martha, female, 35)

All fieldworkers also expressed challenges related to asking some questions in the survey, including those pertaining to the mental health and quality of life of participants. They were concerned that asking study participants to respond to these questions might emphasize any current mental health difficulties they were experiencing, and hence, they felt these questions were some of the most difficult to ask:

The only question I sometimes find tough to ask is that one ‘have you had the thought that you’d be better off dead?’ Because in some circumstances, I’m like ‘aw, am I going down a suicide risk assessment kind of here?’ […] They’re tough. (Fieldworker 1)

I do find it difficult asking a lot of those scale questions [about] how they’re traveling, and you know, trying to get a sense of their mental health sort of status. Because in some ways, it does remind participants how well they’re not traveling, perhaps. So those sorts of questions I think are difficult. (Fieldworker 4)

Fieldworkers were also aware of the potential that some interview questions pertaining to personal or socially taboo topics, such needle sharing practices, sexual practices and sex work, were sometimes more difficult for study participants to answer honestly.

I think those sharing [needles] questions are always going to be fraught, [and] the sexual risk behavior questions were often really confronting for people. [And] men hate answering questions about male-to-male sex if they’re uncomfortable with that idea. (Fieldworker 3)

One study participant, for example, described feeling uncomfortable answering questions about sexual activity, even questioning why those questions were in the survey:

Sometimes I do balk at answering more … more of the sexual activity questions like how many partners have you had, has it been protected or unprotected […] like why do you really need that sort of information? (Tom, male, 38)

Similarly, the section of questions on experiences of assault were described by fieldworkers as challenging to ask at times. As one fieldworker stated, ‘asking someone about […] a traumatic experience is never pleasant.’ Furthermore, although fieldworkers recognized that capturing information about study participants’ experiences of assault was important, it may nonetheless be traumatizing for participants to answer these questions:

There’s a question or a series of questions about whether somebody has experienced an assault since we last saw them … you know, really important to capture information about that … But on the flip side, that’s incredibly difficult for people to talk about at times. (Fieldworker 1)

Contrastingly, many study participants (n = 8) described the experience of completing the survey as a therapeutic-like experience that helped them reflect on their experiences in positive ways:

Yeah [the survey is like a] check in point and more research to make my own life a bit better. (Ann, female, 41)

Furthermore, Tom described how the survey provided a forced reminder to reflect personally on his own experiences in a way that was helpful:

Yeah, I feel like they’re a good check, sort of check-in for myself, given I’m primarily an amphetamine user—sometimes […] the last thing I think about is my mental state and my mental health, so I find some of those questions […] it’s a good way for me to check in with myself and see how I’m feeling. (Tom, male, 38)

One study participant also described how they felt a sense of value and purpose that had been brought about by their repeated annual completion of the survey:

It’s only the last couple of times that I’ve come to realize that I’ve got a history. […] There’s an ongoing record of my, yeah, my existence. […] Yeah, I don’t mind that at all, you know […] because there’s so many people who, yeah are forgotten, and so am I in lots of ways but yeah, I think it’s good. I like it. (Phillip, male, 60)

Discussion

Our study has provided important understandings about the motivations, benefits, and challenges of participation in a longitudinal cohort study of people who inject drugs. Although some findings mirror those of other studies about the experiences of involvement in drug-related research (Festinger et al., 2008; Fry & Dwyer, 2001; Maher et al., 2010; Sunderland et al., 2011), significant insights have been revealed about the unique factors associated with participation in longitudinal quantitative research – from both the perspective of the participant and the fieldworker conducting the survey.

As has been revealed in previous studies (Festinger, 2008; Fry & Dwyer, 2001; Topp et al., 2013), SuperMIX study participants described multifaceted motivations for their involvement in the study, including monetary reimbursement, altruistic factors, and personal benefit.

Our findings support other studies that monetary reimbursement was an important motivating factor for most participants, particularly as an initial incentive. Financial reimbursement in the form of cash, for participation in AOD research has been long viewed as appropriate and standard practice in Australia, as a means to acknowledge participant value in advancing scientific knowledge (Festinger et al., 2005; Fry et al., 2006; Fry & Dwyer, 2001; National Health and Medical Research Centre, 2019), and to facilitate the recruitment of hidden or priority populations who use drugs to increase retention in follow-up studies (Festinger, 2005, 2008; Topp et al., 2013). Nevertheless, providing cash incentives to people who use drugs to participate in research has raised concerns (sometimes even by human research ethics committees) that it might precipitate drug use. Although only highlighted by one participant in our study, who openly described how cash was sometimes used to purchase drugs when he was in withdrawal, we acknowledge that may also indeed be the case for other SuperMIX participants. We argue, however, that it is possible that this cash reimbursement may have prevented this participant from participating in criminal activity in order to get the funds needed to address his withdrawal symptoms. We argue that while vouchers for shopping, or gift cards provide an equivalent monetary value to cash, and may avoid this scenario, they restrict people’s autonomy, may limit use at specific retailers for the purchase of certain goods that participants need, and, as has been noted by other researchers (Maher et al., 2010), can be traded by participants for cash, often at a depreciated value, to purchase drugs (Maher et al., 2010). Furthermore, other studies involving people who use drugs that provided cash reimbursements have found that neither the magnitude nor the mode of incentives provided as cash had any significant effect on rates of new drug use or perceptions of coercion (Festinger, 2005, 2008).

Although economic gain through their participation in the study was valued, our findings are consistent with other studies, that found people who inject drugs, indeed participate in research for reasons beyond that of financial incentives. Themes of citizenship and altruism rang prominent in participant narratives, which highlights the value they felt their experience and knowledge could add to improving the lives of others, through their participation in the study.

Few studies have examined the personal benefit that can be gained for people who inject drugs, through participation in research. Our study found many participants appreciated opportunities to address health care concerns (including treatment for hepatitis C or gaining support and advocacy to access health services), to reflect on their experiences through a non-judgmental and kind interaction, and to help find solutions to pressing issues going on in their lives, such as homelessness or their desire to access drug treatment. Whilst findings underscore the value for participants of having fieldworkers that relate to them on a personal level, that are non-judging and kind, and that can act as advocates for support. Our fieldworker interviews highlighted that finding an appropriate balance between the role of advocate and researcher was sometimes challenging and the blurring of boundaries has the potential to cause emotional stress and burnout for the researcher (McGarry, 2010),

We argue as Sunderland et al. (2011) have that, ‘practitioners who experience moral distress do so because they see themselves as moral agents attempting to achieve an overarching moral ‘good’ that is inherently linked to the purpose and nature of their practice’ (pp. 75–76). As evidenced in our findings, fieldworkers who collect data from study participants care about their work and are committed to making a difference in the lives of those in the study, which they are seeking to actualize via the conduct of their research. As Minkler et al. (2002) have argued, community-based research is a moral practice, in that it is ‘committed to blurring the lines between the ‘researchers’ and the ‘researched’ and that in doing so, it can strengthen individuals’ awareness of their own capabilities as researchers and agents of change.’ (pp. 14–15). We understand the rationale for protocols and rules that many health services and supports have in place—that prohibit interactions outside of the health care being provided—to protect the interests of the client. However, as our findings have highlighted, this behavior can be interpreted as rude or avoidant. As McGarry (2010) has argued, and as is mirrored in our findings, blurring the role of researcher and participants’ perception of them as a friend or counsellor, can encourage rapport-building. Few published studies explore these challenges in drug use research. As highlighted by Higgs et al (2006), the need to provide assertive advocacy was an essential component of the research–participant relationship, as it engendered trust and rapport for both.

Ritter (2022) argues that few definitions of advocacy focus on the ‘research evidence’ component. She has posed, however that it is necessary to think about academic advocacy beyond ‘selling the evidence,’ which is often divorced from the communities and the collective interests being represented. (Smith & Stewart 2017). As Ritter (2022) argues, academic advocacy should involve critically reflecting on whose collective interests are being represented, and whether or not, as research we are indeed empowering the communities for whom we are gathering the evidence. Our findings suggest, many participants felt empowered through their involvement in the study, whether this was through being given the opportunity to reflect on their lives in meaningful ways, being supported to seek treatment for hepatitis C, or simply feeling that someone really cared enough about their life to listen with compassion and understanding. We, therefore, share Ritter’s (2022) view that:

Academics (and their institutions) support advocacy that focuses on research evidence – leaning into the scientific findings and working out methods to ensure that these are effectively translated [but] we need to move beyond this, open out the definition and acceptability of academics as advocates, but at the same time carefully consider our democratic intent and the communities we serve.

Whilst rapport and relationship building were important and crucial for ongoing participant involvement in the study, and ensured participants felt comfortable to discuss potentially difficult and personal questions, we also acknowledge that these issues must be managed carefully, including making sure researchers have the skills and experiences to do so, and are given ongoing professional development opportunities and opportunities to debrief regularly to avoice vicarious trauma (Mirzazadeh et al., 2020).

Our data suggests that any opportunities for fieldworkers to build relationships with participants, including engagement outside of the survey itself, are vital for rapport and trust building. Participants described how they trusted, felt more comfortable with, and provided more accurate data to the fieldwork interviewers that they had seen multiple times, compared to previously unknown fieldworkers. Abadie et al. (2018), who conducted interviews with participants from a large longitudinal study of people who inject drugs, also found that participants felt more comfortable with staff they knew compared to newer staff. Although, a strong trusting relationship between participants and researchers is obviously important for continued participant involvement and to ensure participants feel comfortable discussing and sharing sensitive information (Abadie et al., 2018, 2019). As our findings and those of Abadie attest, relationships are not a static notion but change and build over time.

Attrition and turnover of staff is an inevitable part of working in this sector, but our data suggest that providing opportunities for more long-term staff to introduce new fieldworkers to research participants makes for better rapport and relationship building.

As highlighted in Amy’s comment above, fieldworkers with lived experience of injecting drug use can offer a unique perspective including understanding participant context and evoking feelings of mutuality and empathy (Chapman et al., 2020). A growing body of research has been examining the benefits of employing people with lived experience of drug use in AOD treatment and harm reduction roles (Austin & Boyd, 2021; Chapman et al., 2020; Eddie et al., 2019; Olding et al., 2021). It is widely recognized in these studies that the knowledge and lived expertise of people who use drugs, and the trusting relationship this can afford clients can be of great value for increasing access to and maintaining their involvement services for people who use drugs. Fewer studies, however, have explored the benefits of employing people with lived experience to undertake drug-related researcher roles (Crofts, 1998; Higgs et al., 2001; Ibáñez-Carrasco et al., 2019; Salazar et al., 2021). Not surprisingly, these studies have also highlighted benefits for increasing the engagement and trust of participants involved in drug-related research. Nevertheless, issues have also been raised for consideration, with regards to the employment of people with lived experience in researcher roles. For example, in 2021 Austin and Boyd found some researchers with lived experience experienced stigmatizing and discriminatory experiences while interacting with co-workers who were not defined by their substance use, as well as institutions like the police and social services (Austin & Boyd, 2021). Furthermore, Salazar et al. (2021) has noted that institutional barriers many prevent many people who use drugs out of conventional mechanisms for employment, including encounters with the criminal justice system, given the criminalization of drug use. We acknowledge the benefits of employing fieldworkers with lived experience to undertake researcher roles with people who use drugs, as a mechanism for improving study engagement and retention. We therefore advocate for addressing barriers that maximize opportunities for their involvement, including ensuring working environments are supportive and attentive to the intersecting social-structural factors, such as stigma and discrimination, that may impede individuals’ capacity to undertake these roles. Furthermore, we argue that protocols must be in place to ensure appropriate boundaries are maintained between researcher and researched and that mechanisms are in place to avoid emotional burnout of researchers with lived experience (Austin & Boyd, 2021; Olding et al., 2021).

Some participants in our study raised challenges responding to sensitive and scaled survey questions, including sometimes not feeling comfortable to answer questions truthfully or not knowing how to respond. Using Likert and Likert-type scales, such as the SF-8 and PHQ-9 utilized by SuperMIX, reportedly create limitations due to individualized participant understanding and interpretation of the scales’ meaning (Bishop & Herron, 2015). Validated scales, however, like those used in our SuperMIX survey, are critical for ensuring health research data collected is reliable and valid (Boateng et al., 2018).

Misreporting about sensitive topics in surveys is common and is often due to situational circumstances including the participant editing information to avoid embarrassment or to conform to societal expectations of what is deemed ‘acceptable’ (Tourangeau & Yan, 2007). Conducting research on sensitive topics in healthcare, however, creates vital information that provides understanding about under-represented areas from the perspective of the consumer (Choi & Pak, 2005; Pinto et al., 2022), which includes population-level health data about people who inject drugs. Therefore, a balance between the challenges of asking about sensitive topics and the value of information obtained is needed, and as our findings attest, greater participant-researcher rapport limits this weakness.

Although previous qualitative studies have described the research interview as providing participants with a therapeutic-like experience (Birch & Miller, 2000; Dickson-Swift et al., 2006; Elmir et al., 2011; McGrath, 2003; Wolgemuth et al., 2015), our study expands on this literature to explain how a quantitative annual questionnaire like the SuperMIX survey, can also provide participants with this opportunity. That is, most participants felt involvement in the SuperMIX study positively impacted their lives, including providing them with a sense of belonging and purpose. Our data reveal that participation appears to have provided the opportunity to evoke feelings of value and purpose for some participants, and for some provided a therapeutic-like experience which allowed them to reflect positively on their lives.

Study limitations and strengths

COVID-19 impacted the sample size by forcing us to cease data collection earlier than planned. Our interviews were limited to those who were still involved in the SuperMIX cohort study, which could account for a greater proportion of positive responses given those for whom experiences may have been negative may no longer be participating in the study. Further research with cohort study participants who are no longer involved in studies, to understand reasons for non-continued participation and help improve study retention is therefore warranted. A further limitation is that we did not explore how the gender of the fieldworker and the study participant interacts with the research experience – this area therefore requires further examination.

Conducting a study about participant experience using this cohort has created a unique opportunity to analyze and collect data from a group of people with unique insights into the research experience. This study’s findings may be useful and applied to similar cohort studies, to assist with survey curation and act as a baseline for future research.

Conclusion

Our interviews with research participants involved in Australia’s largest and longest running study of people who inject drugs in Victoria, together with data from fieldworkers conducting interviews, provides an in-depth understanding of the experiences of on-going participation in the SuperMIX cohort study. Findings confirm and highlight that participation in longitudinal research can positively impact participants experiences by providing them with an opportunity for engagement that affords them not only a chance to share their experiences but also to contribute to knowledge production. Sharing their experience can empower participants by evoking a sense of belonging and emulate a therapeutic-like experience.

Acknowledgements

The authors gratefully acknowledge the support of the Victorian Operational Infrastructure Fund to the Burnet Institute. The funders had no input into the work. We would like to acknowledge the contribution of the SuperMIX participants, the Burnet Institute fieldwork team and supporting community services and organizations. We would also like to thank the broader Burnet Institute fieldwork team and supporting community services and organizations, who have been involved in study implementation.

Disclosure statement

PD has received an investigator-driven grant from Gilead Sciences for unrelated work on hepatitis C and an untied educational grant from Reckitt Benckiser for unrelated work on the introduction of buprenorphine-naloxone into Australia. He has served as an unpaid member on an Advisory Board for an intranasal naloxone product. PH has received investigator-driven research funding from Gilead Sciences and Abbvie for work on hepatitis C unrelated to this work. All other authors have nothing to declare.

Additional information

Funding

The SuperMIX study is funded by the Colonial Foundation Trust and the National Health and Medical Research Council [#545891, #1126090]. The Burnet Institute receives funding from the Victorian Government Operational Infrastructure Support Program.