In total, 20 men and 10 women participated in the study (Table 1), no one refused to participate in the study. The four focus groups ranged in size from 5 to 12 participants, with the vast majority having a Farsi ethnicity (n=29) and only one person being Azari (Turk). The median age of participants was 35 years (IQR 31-40), the majority had either a primary (23.3%, n=7) or middle (33.3%, n=10) school level of education. Most participants were currently living in shelters (30.0%, n=9), seven individuals (23.3%) had their own house to live in, five (16.7%) were currently living with friends, family or partner and three (10.0%) were homeless. Nearly half of participants (43.3%, n=13) were currently living with a same-sex friend, eight (26.7%) were living alone and six (20.0%) were currently living with their spouse and children. The median age at first injecting was 23.5 years (IQR 19-30 ) among participants and 73.3% (n=22) reported injecting drug use within the last month. Among those reporting injecting drug use in the last month, the median number of days injected drugs in the last month was 5 (range 1, 30) and the median number of injections per day in the last month was 1 (range 1, 3).
Table 1. Characteristics of participants in focus group discussions of barriers and motivators to participation and retention in cohort studies in Iran
Variables
|
N= 30
|
Age (years), median (IQR)
|
35 (31-40)
|
Sex, n (%)
|
|
Female
|
10 (33.3)
|
Male
|
20 (66.7)
|
Education, n (%)
|
|
Illiterate/Read and write only
|
3 (10.0)
|
Primary school
|
7 (23.3)
|
Middle school
|
10 (33.3)
|
High school
|
4 (13.3)
|
Diploma or higher
|
6 (20.1)
|
Ethnicity, n (%)
|
|
Fars
|
29 (96.7)
|
Azari/Turk
|
1 (3.3)
|
Current living place, n (%)
|
|
Own house
|
7 (23.3)
|
Parents’ house
|
2 (6.7)
|
Friends, family or partner house
|
5 (16.7)
|
Shelter
|
9 (30.0)
|
Homeless
|
3 (10.0)
|
Others (not specified)
|
4 (13.3)
|
Currently living with, n (%)
|
|
Spouse and children
|
6 (20.0)
|
Any partner
|
1 (3.3)
|
Parents
|
2 (6.7)
|
Other family members
|
0
|
Same-sex friends
|
13 (43.3)
|
By themselves
|
8 (26.7)
|
Age at first injection (years), median (IQR)
|
23.5 (19-30)
|
Self-reported drug injection in the last month, n (%)
|
22 (73.3)
|
Number of days injected drugs in the last month, median (range)*
|
5 (1, 30)
|
Number of injections per day in the last month, median (range)*
|
1 (1, 3)
|
* Among those reported drug injections in the last month
Heroin/crack was the most commonly used (last six months, 86.7% [n=26]; last month, 80.0% [n=24]) and injected (last six months, 96.7% [n=29]; last month, 73.3% [n=22]) drug among the study participants (Table 2). Iranian Crack is a new form of narcotic substance usually containing heroin, acetaminophen, caffeine, morphine, codeine, thebaine and acetylcodeine, so is heroin-based and hence is quite different from common crack cocaine found in the Western countries. Heroin/crack was also the primary drug of choice in the last six months (use 76.7% [n=23], injecting 90.0% [n=27]) among participants. Methamphetamine was the second most frequently used drug both in the last six months (76.7%, n=23) and the last month (60.0%, n=18). However, no one reported injecting amphetamine within the last six months or the last month. The other commonly used drugs among the participants were methadone (last six months, 53.3% [n=16]; last month, 30.0% [n=9]), sedative drugs (last six months, 50.0% [n=15]; last month, 20.0% [n=6]) and codeine (last six months, 33.3% [n=10]; last month, 13.3% [n=4]).
Table 2. Type of drugs used/injected by participants in focus group discussion of barriers and motivators to participation and retention in a cohort study in Iran, 2016
Type of drugs
|
Any drug used*, n (%)
|
Any drug injected, n (%)
|
Main drug used/injected in the past 6 months, n (%)
|
In the past 6 months
|
In the past 1 month
|
In the past 6 months
|
In the past 1 month
|
Used*
|
Injected
|
Heroin/Crack
|
26 (86.7)
|
24 (80.0)
|
29 (96.7)
|
22 (73.3)
|
23 (76.7)
|
27 (90.0)
|
Methamphetamine
|
23 (76.7)
|
18 (60.0)
|
0
|
0
|
2 (6.7)
|
0
|
Methadone1
|
16 (53.3)
|
9 (30.0)
|
1 (3.3)
|
0
|
2 (6.7)
|
1 (3.3)
|
Sedative drugs
|
15 (50.0)
|
6 (20.0)
|
0
|
0
|
0
|
0
|
Codeine
|
10 (33.3)
|
4 (13.3)
|
0
|
0
|
0
|
0
|
Opium/Opium extracts
|
8 (26.7)
|
2 (6.7)
|
2 (6.7)
|
2 (6.7)
|
1 (3.3)
|
1 (3.3)
|
Hashish/Marijuana
|
6 (20.0)
|
1 (3.3)
|
0
|
0
|
0
|
0
|
Nass (powdered tobacco)
|
6 (20.0)
|
5 (16.7)
|
0
|
0
|
0
|
0
|
Alcohol
|
3 (10.0)
|
0
|
0
|
0
|
1 (3.3)
|
0
|
Norjizak/Tamjizak2
|
2 (6.7)
|
2 (6.7)
|
1 (3.3)
|
0
|
1 (3.3)
|
1 (3.3)
|
Tramadol
|
2 (6.7)
|
2 (6.7)
|
0
|
0
|
0
|
0
|
Cocaine
|
1 (3.3)
|
0
|
0
|
0
|
0
|
0
|
Ritalin
|
1 (3.3)
|
1 (3.3)
|
0
|
0
|
0
|
0
|
Ecstasy (X)
|
0
|
0
|
0
|
0
|
0
|
0
|
LSD/Acid
|
0
|
0
|
0
|
0
|
0
|
0
|
Glue
|
0
|
0
|
0
|
0
|
0
|
0
|
Others (not specified)
|
1 (3.3)
|
0
|
1 (3.3)
|
0
|
0
|
0
|
1Non-prescription use
2Norjizak/tamjizak is a narcotic drug mostly used through injection and is produced by a combination of different opioids, steroids, and benzodiazepines
* Including injecting and non-injecting drugs
Table 3 represents self-reported HCV/HIV testing and diagnosis history among participants. A total of 12 participants (40.0%) reported ever being tested for HCV, of whom four (33.3%) reported being HCV positive. No one knew whether they were tested for Anti-HCV antibodies or HCV-RNA. Compared to HCV testing, a larger proportion of participants (63.4%, n=19) reported ever being tested for HIV, of whom most (78.9%, n=15) reported being negative, only person (5.3%) stated that they are HIV-positive and three did not know or report their HIV status (15.8%).
Table 3. Self-reported HCV and HIV testing and status among participants in focus group discussion of barriers and motivators of participation and retention in a cohort study in Iran, 2016
Variables
|
N= 30
|
Ever tested for HCV
|
|
Yes
|
12 (40.0)
|
No
|
14 (46.7)
|
Unsure/Did not know
|
4 (13.3)
|
Self-reported HCV infection status*, n (%)
|
|
Positive
|
4 (33.3)
|
Negative
|
8 (66.7)
|
Unsure/Did not know
|
0
|
Self-reported anti-HCV serostatus*, n (%)
|
|
Positive
|
0
|
Negative
|
0
|
Unsure/Did not know
|
10 (83.3)
|
Missing
|
2 (16.7)
|
Self-reported HCV RNA status*, n (%)
|
|
Positive
|
0
|
Negative
|
0
|
Unsure/Did not know
|
10 (83.3)
|
Missing
|
2 (16.7)
|
Ever tested for HIV, n (%)
|
|
Yes
|
19 (63.4)
|
No
|
10 (33.3)
|
Unsure/Did not know
|
1 (3.3)
|
Self-reported HIV serostatus**, n (%)
|
|
Positive
|
1 (5.3)
|
Negative
|
15 (78.9)
|
Did not know
|
2 (10.5)
|
Missing
|
1(5.3)
|
* Among those ever tested for HCV in their lifetime
** Among those ever tested for HIV in their lifetime
The goal of this analysis was to provide a description of barriers and motivators to participation and retention in HIV/HCV cohort studies (Supplementary Table 1) as described by the male and female PWID participating in the focus groups. The following section is a summary of the participants’ responses regarding such barriers and motivators:
Barriers to participation and retention
The majority of participants thought that conducting a cohort study is important and useful and were willing to participate in such study if their major concerns were addressed. The main concerns with participation and retention in such studies were:
I) Breach of confidentiality and misuse of data
Breach of confidentiality was the central core of concerns regarding engaging in cohort studies among PWID, particularly women. A few participants were deeply concerned with misuse of data by police and judicial authorities and getting arrested or incarcerated as a consequence. The fear of being recorded on camera or other devices by research or site staff was cited as an important reason why some might resist getting involved in such studies.
“… My family is very well-known. I am an outgoing person myself. My biggest concern is to risk my reputation and the fact that nobody knows that I am injecting drugs. I will get into trouble if my brother or my aunt who is a nurse gets to know this.” – Male, FGD1.
One female participant joked about the potential consequences of private and confidential information being divulged:
“...If my family becomes aware of my drug injection, I’ll have to kill myself.” – Female, FGD2
II) Fear of positive test results
Fear of learning one's HIV or HCV status was cited as another barrier to participating in cohort studies. Several individuals mentioned that they usually refuse to get tested for HIV or HCV because they believe they cannot face the reality. Some stated that they preferred not to be tested at all because they can assume that they are healthy and continue living with happy thoughts.
III) High level of commitment needed/competing priorities
Some participants believed that getting involved in a cohort study and trying to attend all the potential follow-ups needs a lot of commitment and can be time-consuming.
A number of participants stated that follow-up frequency requirements might interfere with their working schedule and threaten their employment which will eventually lead them to drop out of the study. Similarly, a few participants believed that the time they would spend to commute and attend the visits can be used to look for drugs or find the means to afford drugs. They were also worried that during the study procedures, they may not be able to use or inject drugs and therefore they might experience withdrawal-associated symptoms which are very unpleasant.
IV) Marginalization
Homelessness or instability in living arrangements was another barrier drawn from the discussions between participants. Some participants declared that due to their housing situation, they can only be reached by outreach efforts and they have no other means of contact with the outside world. In addition, most stated that they barely have access to transportation facilities from where they live which might make it challenging to participate and particularly retain in the study.
“…The place I am hanging out with my friends is a corner in a pistachio garden. One person is injecting drug, the other is preparing drug using a spoon, and the other is using Shisheh (Crystal methamphetamine). Altogether we are about 4. Nearby, another group of 5 are also hanging out. Most are homeless, all they have is in their backpack.” –Male, FGD3
Motivators of participation and retention
I) Monetary incentive
Receiving monetary incentive was the top motivator chosen among the study participants to get involved and remain in a cohort study. While the primary incentive was mentioned to be very important to engage people, the majority liked the idea of monetary rewards progressively increasing for each scheduled follow-up as the study progresses, and an additional incentive for successfully recruiting peers and partners in the study.
Along the same lines as money, covering the costs of commuting to study sites or providing transport options for participants was stated to potentially address some of their monetary concerns and can be regarded as a good motivation to keep participants engaged.
II) The thought of a better and healthier life
Most, but not all, participants believed that their participation in such studies can be a solution to their problems or a new hope for them and their families to get better and have a healthier life.
A participant addressed monetary incentive and belief in the possibility of having a better life along with being reassured of data confidentiality as the three keys to success of cohort studies:
“... In my opinion, three things can make this study successful. First, monetary rewards; so that the study participants do not worry about their time and income anymore. Second, telling participants how this study would make their lives better, easier and safer. Third, building rapport with the participants and reassure them that their information will be kept confidential.” Male, FGD3
Another participant suggested that such studies can be informative about health and can help them gain a better understanding of their health-risk behaviors:
“... You can help us increase our health-related knowledge. For example, most men are not aware of methamphetamine use complications. They think that side effects like violence and anxiety are part of their personality and not related to methamphetamines." Male, FGD1
III) Protection from police and abstinence camps
Another important motivation for participating and remaining in a cohort study was mentioned to be strategies that can keep people safe from police pursuit and from being sent to drug abstinence camps. A few participants suggested being provided with an introduction letter or a membership card for the study which explains that the person carrying the letter or card is currently involved in a study and therefore should be protected from drug-related police interventions during the study period.
Barriers to peers and partners recruitment
We asked participants about whether they are willing and able to invite and recruit their peers and partners (i.e. sexual and/or injecting partners) in a cohort study and what they think might be barriers and motivators for themselves in doing so and for their peers or partners to get involved.
Most participants claimed that they know other PWID (between 2 and 8 peers on average) and can invite them to the study. The majority also knew a place or venue where their peers who usually do not visit DICs or utilize services can be approached. Most, but not all, were also eager to invite and bring their sexual and/or injecting partners to the studies with them. However, they felt there is a need to address some problems or barriers first. Apart from fear of data misuse and police arrest that was mentioned by participants to be important barriers for peers and partners to engage in the studies, a few other specific barriers are presented here:
I) People who inject drugs are hard to find
Many participants expressed that injecting is becoming rare among people and therefore it is very hard to find people who inject drugs. They also alluded that majority of PWID do not have a stable location to live and are always moving from one place to another. Many of these people can only be approached in isolated and in many cases remote venues which makes it even more difficult to invite them to the studies.
“... Nowadays, very few people inject drugs. Of those, not all disclose their injecting status and they mostly can be found in remote venues.” – Male, FGD1
II) Lack of trust and comfort
While the majority of participants stated that they know someone who is injecting drugs, not all felt comfortable to invite them to participate in the study. Interestingly, some female participants mentioned that female PWID might have less trust in female peers, compared to their male counterparts. So, it would be easier for male PWID to recruit female peers. However, majority stated that they would have no concerns with recruiting their injecting partners to the study, providing that they were interviewed separately. Two female participants said they would feel uncomfortable introducing their partners to others.
“... I know many people who inject drugs. I am afraid to tell them, but I will do my best. Maybe they are interested, I don’t know.” Female, FGD2.
Motivators of peers and partners recruitment
I) Monetary incentives
The same motivators as ones discussed for participation and retention in cohort studies were stated when talking about peer and partner recruitment to these studies. An additional monetary incentive ($2) was stated to be a great drive for participants to invite and engage their peers and partners (i.e. sexual and/or injecting partners) in such studies. Participants also found monetary incentive to be a good motive for their peers or partners to get involved in the study. Alternative incentives such as meals, clothes and methadone coupons were also mentioned to be good incentives for peers and partners.
II) Building trust and positive relationships
Being supportive of people who inject drugs when approaching them was cited to serve as an effective motivator to get them involved in studies. Participants believed that successful engagement of PWID in long-term studies needs a good level of trust and rapport between them and health workers or researchers. It was also alluded to be very important for health workers or researchers to remain kind and encouraging throughout such studies in order to keep people motivated for the whole time.
Logistics needed for cohort studies
After debriefing the FGD participants about the aims and outcomes of a cohort study, the potential number of visits involved (screening, the one and a half month follow-up and then quarterly visits) and the types of bio-behavioral data begin collected, participants indicated their preferred time, location and other logistics for attending the study visits. The majority agreed on DICs like the one where the FGDs were occurring as their preferred place for the interviews and other study assessments. However, most mentioned they prefer not to be interviewed by the staff at DICs, mostly due to their concerns regarding breach of confidentiality. They were also more willing to be consented and interviewed by same‐sex interviewers. For the majority of male participants, the preferred time and days for attending the study visits were between 4:00 and 7:00 pm, any day during the week except Thursdays and Fridays (weekends in Iran calendar). This is while female participants had a wide range of preferred time and days for attending the visits, with half of them agreeing on Tuesdays’ mornings.
While some participants said they are only accessible by outreach workers, some others mentioned they own a phone or have access to a phone and have no problem with giving their details to the study team. Most did not have any objection against using devices like iPad or tablets to collect data during the study visits, and even believed applying such devices is more beneficial since the information collected can be password protected this way.