Department of Epidemiology, HIV and STD

ETHICS & BEHAVIOR, 26(2), 99–109
Copyright © 2016 Taylor & Francis Group, LLC
ISSN: 1050-8422 print / 1532-7019 online
DOI: 10.1080/10508422.2014.991868
The Association Between Age and Ethics-Related Issues
in Using Social Media for HIV Prevention in Peru
ChingChe J. Chiu
Department of Family Medicine
University of California, Los Angeles
Luis Menacho
Department of Epidemiology, HIV and STD
Universidad Peruana Cayetano Heredia, Perú
Sean D. Young
Department of Family Medicine
University of California, Los Angeles
Little research has focused on the ethical issues around using social media for HIV prevention in lowand middle-income countries, such as Peru. This study surveyed participants from the HOPE social
media HIV intervention in Peru to assess their experiences and perceptions of ethical issues in the
study and the impact of age on their experiences and perceptions. This study found that, compared
to younger participants, older participants were more likely to express higher levels of understanding
of the consent form and trust that other participants were real. Older participants also reported being
less likely to benefit from learning about their HIV status. Findings suggest that age plays a role in
participants’ experiences in a social-media-based HIV intervention.
Keywords: ethics, MSM, Peru, HIV/AIDS, social media
INTRODUCTION
Social media and Internet use have become immensely popular. According to a 2014 survey, it
was estimated that 74% of American adult Internet users use some form of social media (Pew
Research Center, 2014). The use of social media is especially popular among youth online (ages
18–24), as approximately 90% of youth are social media users (Pew Research Center, 2014).
The popularity of social media has enabled these technologies to emerge as platforms for
delivering health information to at-risk individuals. Social media and Internet-based studies to
date have focused on health behaviors and health-related conditions, such as anxiety, insomnia,
Correspondence should be addressed to Sean D. Young, Department of Family Medicine, University of California,
Los Angeles, 10880 Wilshire Boulevard #1800, Los Angeles, CA 90024. E-mail: [email protected]
100 CHIU, MENACHO, YOUNG
diabetes, physical activities, and nutrition (Cavallo et al., 2012; March, Spence, & Donovan,
2009; Napolitano et al., 2003; Ritterband et al., 2009; Wantland, Portillo, Holzemer, Slaughter,
& McGhee, 2004). In addition, pilot studies have shown promising results in using social media
for prevention of stigmatized diseases, such as HIV prevention (Bull, Levine, Black, Schmiege,
& Santelli, 2012; Young et al., 2013; Young & Jaganath, 2013). For example, in the Harnessing
Online Peer Education (HOPE) study, African American and Latino men who have sex with
men (MSM) at risk of HIV in the Facebook (intervention) group were twice as likely to request
HIV home testing kits compared to the control group (Young et al., 2013; Young & Jaganath,
2013). Furthermore, the Just/us study provided youth (ages 18–24) at risk for sexually transmitted
infection prevention messages via Facebook. At 2 months, participants in the intervention group
reported higher levels of condom use (Bull et al., 2012). However, both of these studies are based
in the United States.
Social media and Internet use are also increasing in low- and middle-income countries
(LMICs), such as Peru. A recent study found that Internet users in LMICs are also avid social
media users, and the percentages of social media users in several LMICs have exceeded the percentage in the United States (Rainie & Poushter, 2014). In Peru in 2009, for instance, 75% of
Peruvian youth (ages 15–29) and 60% of Peruvian adult Internet users accessed social media
(InterMedia, 2009. Facebook is particularly popular. A recent local survey suggested that there
are more than 12.4 million Peruvian Facebook users and the number of Facebook users represents
55% of Peru’s population (Pereyra & Santillana, 2014). The rapid increase in social media use in
Peru provides a new way to reach individuals at high risk of HIV that bypasses traditional social
barriers, such as stigma and homophobia.
Ethical questions and concerns have been raised regarding participants’ safety and comfort
when participating in social-media-based HIV interventions. A small number of studies have
identified privacy and informed consent issues in using social media, suggesting that researchers
should become familiar with current privacy settings on social media to help protect participants
and educate them on how to improve their privacy (Bull et al., 2011; Young, 2012). Additional
research has urged researchers to take measures to ensure participants’ understanding of informed
consent and study process (Pequegnat et al., 2007; Rosser et al., 2009). Currently, no research has
assessed participants’ view on these ethical questions and concerns.
Although researchers have hypothesized that participants’ demographic characteristics, such
as age, might affect participants’ experiences in social-media-based HIV research (Moreno, Fost,
& Christakis, 2008), few studies have explored this topic, and no known studies have assessed
this issue among participants in LMICs, such as Peru. Age, in particular, may impact individuals’
engagement in social-media-based HIV interventions as participants might lose interest if they do
not relate to or identify with the information or how it is provided. For example, MSM of different
age groups often have different risk profiles. Data have shown that HIV is growing rapidly among
young MSM ages 13 to 24 in comparison to other age groups (Centers for Disease Prevention
and Control, 2014) and these youth were more likely to engage in HIV risk behaviors, such
as unprotected anal intercourse and substance use, compared to their older counterparts (Broz
et al., 2014; Hall, Byers, Ling, & Espinoza, 2007; Pappas & Halkitis, 2011). Therefore, interventions might need to tailor the information to address differences in individuals’ risk behavior
based on age. Second, social media is constantly changing (e.g., updates to the interface, terms
and agreement, and general features), and people of different age groups use and experience
social media differently. For example, although the 45- to 54-year-old group is the fastest growing demographic group on Facebook (Cooper, 2013), adult social media users (18+) were less
ISSUES OF SOCIAL MEDIA HIV INTERVENTION 101
likely to contribute to social media content (e.g., posts, photos, and clips) than younger users
(Pew Research Center, 2014). In addition, social media has greatly expanded individuals’ social
networks to include strangers (The Annenberg Public Policy Center, 2006). Younger individuals
who grew up with social media (Pew Research Center, 2014) might be more comfortable with
interacting with strangers online (The Annenberg Public Policy Center, 2006).
Based on these patterns in social media use, we hypothesized that older participants might
express higher levels of distrust in the study than younger participants, and therefore might be
more reluctant to share or post information in the social media group, including HIV-related information. If interventions cannot actively engage older participants, older participants may become
indifferent and subsequently benefit less from study participation. To address these questions
related to age and ethics, the study sought to recontact participants from a previous social-mediabased HIV prevention study to assess the ethical issues associated with using social media for
HIV prevention research and how age differences might be associated with their experiences in
the study from recruitment, informed consent, and intervention to follow-up.
METHODS
Institutional Review Boards at UCLA and Epicentro approved the study protocol for the original
HOPE Peru study and the current study. The Institutional Review Boards approved the HOPE
Peru study to follow up with participants 1 year after the intervention, and the current study was
approved as a modification to the follow-up. Participants received information about the study
and completed informed consent online. The study adheres to the current recommendations on
using social media in HIV research (Young, 2012).
Based on the diffusion of innovations model, the HOPE Peru study was a 12-week HIV
intervention that delivered peer-led HIV education over Facebook to increase HIV testing and
prevention behaviors. All participants were recruited via the Internet (e.g., website banner ads,
e-mail lists, and Facebook ads), and eligible and consented participants were then randomized
into one of the two conditions: an HIV intervention Facebook group and a standard of care control group (general health). The HOPE Peru study included 556 participants who (a) were male,
(b) were 18 years of age or older, (c) were residents of Greater Lima, (d) were current Facebook
users, and (e) had had sex with a man in the past 12 months. Only MSM were included in the
study, because the majority of the HIV epidemic in Peru is concentrated among MSM (Cáceres
& Mendoza, 2009; Sanchez et al., 2007; UNAIDS, 2010). Peer leaders were recruited using the
same inclusion criteria and were randomly assigned to the control or intervention group. Peer
leaders are encouraged to engage the participants by sending messages, chats, and wall posts.
Peer leaders in the intervention group were instructed to communicate about HIV prevention
and testing, whereas peer leaders in the control group focused on exercising, healthy eating and
maintaining a low-stress lifestyle.
In June 2014, approximately 11
/
2 years after the HOPE Peru study, MSM from the HOPE Peru
study were recontacted using e-mail, social media, and phone and invited to complete a survey
to assess their experiences in the social media HIV prevention study. This ethics-related followup study provided enough funding to recruit 221 participants from the HOPE Peru study. After
the first 221 MSM (approximately 110 from each condition) from the HOPE Peru study (out of
556) completed surveys, we closed the study to further participation. All participants (intervention
102 CHIU, MENACHO, YOUNG
and control) completed the same survey. The participants were compensated with an equivalent
of $11 in Peruvian Sol.
Measures
The 40-item survey assessed study participants’ experiences and perceptions of ethical issues in
recruitment, informed consent, intervention, and follow-up/after intervention. The survey was
developed by the investigators with input from the community advisory board. The survey has
not yet been validated due to this research not having been previously conducted.
Basic Demographics
Basic demographics included age, sexual identity, highest education attainment, and
race/ethnicity. Using the median (31.0) and quartiles, participants were categorized into three
different groups based on age: 20–26, 27–36, and 37 and older.
Recruitment items (n = 11). Participants were asked to indicate whether they had ever
participated in other online or HIV studies (online and offline). Using a 5-point Likert-type scale,
participants were asked to rate their comfort/discomfort levels in the recruitment procedure of
the study, such as the idea of participating in the study (How comfortable were you about the
idea of participating when you first read or heard about the study?) and the banner ads used (If
you were recruited online by clicking on a banner advertisement, how comfortable were you
clicking on the advertisement?). This study also assessed participants’ comfort/discomfort levels
regarding key characteristics of the study when they first heard about the study, such as Facebook
based (How comfortable were you that the study was entirely conducted on Facebook?), HIV
and MSM related (How comfortable were you that only MSM would be included in the study?),
and peer led (How comfortable were you that peer health educators were going to educate you
online?).
Informed consent items (n = 3). On a scale of 1 (did not understand at all) to 5 (completely understood), participants were asked to indicate how much they understood the consent
form and study process. In addition, they were asked how similar/dissimilar was their experience
participating in the study from their understanding of the study.
Intervention items (n = 15). Using a 5-point Likert-type scale, participants were asked to
indicate their comfort/discomfort levels in study procedures, including (a) completing the baseline survey (How comfortable were you completing the survey?), (b) being sent a Facebook group
invitation, (c) joining a social-media-based research study with a group of strangers, (d) seeing
other people’s discussions on the group wall, and (e) posting on the group wall. Participants were
asked whether other group members’ comments made them feel uncomfortable (Did people in
the group post anything that made you uncomfortable?). Participants were also asked to rate their
trust in other participants and researchers (How much did you trust that the other people in the
group were telling the truth in their posts/how much did you trust that the investigators were
telling the truth about the study?) and their belief that other group members and researchers making posts were real people (How much did you trust that the other people in the group were real?).
Last, participants were asked whether they had met up (Did you meet up with other members of
ISSUES OF SOCIAL MEDIA HIV INTERVENTION 103
the group?) or had sex with other participants in the study (Did you met new sexual partners as a
result of joining the group?.
Postintervention follow-up items (n = 21). Using a 5-point Likert-type scale (very negatively to very positively), participants were asked how much they benefited in the following areas
as results of their participation: (a) learning more about health (As a result of your participation in
the study, how much have you benefited in learning more about health?), (b) learning more about
sexual health, (c) gaining new friends, (d) feeling closer to the MSM community, (e) feeling better
about yourself, (f) learning about your HIV status, (g) improving HIV care, (h) learning where to
receive sexual health services, (i) gaining a job, (j) learning about research, (k) increasing trust in
other people, and (l) increasing trust in research. The survey also asked the participants whether
they would have still participated in the study (if they could go back in time) and whether they
would recommend this type of study to their friends. They were also asked whether the study had
changed their behaviors, such as maintaining a healthy lifestyle (Compared to before you joined
the study, how much more likely are you to maintain a healthy lifestyle?), practicing safe sex,
getting regular HIV tests, and participating in research studies.
Ethics-related items (n = 15). The study included 15 ethics-related items. Participants
were asked about privacy issues (How concerned were you that your behavior online would be
tracked by companies such as Google or Facebook if you click on the ad to participate?), informed
consent, comfort levels in study procedures (completing the baseline survey, having to accept an
invitation to join the Facebook group, etc.), unintended consequences (meeting sexual partners or
discomfort from others’ posts), and trust in other participants and researchers.
Analysis
All analysis was conducted using R statistical software (version 3.1.0). Ten participants were
excluded from the study because they were missing basic demographic information (n = 211).
Logistic and cumulative logit regression models for binary and ordinal outcomes, respectively,
were used to evaluate the association between age groups and ethics outcomes. The final model
adjusted for education levels, prior HIV research experience, and group assignment (control vs.
intervention). Only significant results were included in the tables.
RESULTS
Basic Demographics
Roughly equal numbers of participants were from the control (51.7%) and the intervention
(48.3%) groups. Participants were mostly gay (88%), college-and-above educated (63.6%), and
of mixed race (72.4%). The ages of the participants ranged from 20 to 54, and the mean age
was 31.82 (SD = 7.68). More than one fourth of participants had prior HIV research experience
(32.7%; Table 1).
104 CHIU, MENACHO, YOUNG
TABLE 1
Basic Demographics Among Peruvian Men Who Have Sex With Men Who Participated in a
Social-Media-Based HIV Prevention Study, Greater Lima, Peru
Participantsa
n %
Group Intervention 102 48.3
Control 109 51.7
Age M (SD) 31.82 7.68
Sexual identity Gay 169 88
Bisexual 20 10.4
Heterosexual/others 3 1.6
Educational attainment Secondary 11 5.7
Institution 52 27.1
Vocational training 7 3.6
University 113 58.9
Above 9 4.7
Race Native Peruvian 1 0.6
White 36 20.7
Black 8 4.6
Mixed 126 72.4
Asian 3 1.7
Prior HIV research experience Yes 69 32.7
No 142 67.3
an = 211.
Binary Association Between Age and Ethics Outcome
Approximately 30% of participants had prior experience with online studies. Individuals older
than 37 (40%) were more likely to have had participated in an online study before in comparison
to the 20–26 group (18.5%, p = .016). Roughly 13.8% of individuals ages 20–26 expressed that
they did not understand or felt neutral about the consent form and study process in comparison
to 13% and 7.3% in the 27–36 and 37+ groups. The different levels of understanding between
the 37+ and 20–26 groups were significant (0.024). Participants ages 37 or older were also more
trusting toward other participants in the group (61.8% vs. 40.8%) and the investigators of the
study (77.8% vs. 64.0%) than the younger participants, ages 20–26 (p = .023, .014). Participants
in the 27–36 group benefited less from the study in learning about sexual health than participants in the 20–26 group (64% vs. 85.7%, p = .025). Throughout the study, older participants
(37+) reported learning less about HIV status (51.9% vs. 80%) and HIV care (58.2% vs. 82%)
in comparison to participants ages 20–26 (p = .010, .026). No differences were found in other
recruitment, informed consent, intervention, and follow-up outcomes (Table 2).
Adjusted Odds Ratios for Age on Ethics Outcomes
In comparison to younger participants aged 20–26, older participants (37+) were 2.24
(p = .0063) and 2.00 (p = .0050) times more likely to express higher levels of understanding
TABLE 2
Binary Association Between Age and Ethics Outcome
Totala 20–26b 27–36c 37+d
Outcomes n % n % n % n % p
Had you ever participated in an online study before this one? Yes 61 29.5 10 18.5 23 29.1 22 40.0 .016∗
No 146 70.5 44 81.5 56 70.9 33 60.0
How much did you understand the consent form and study process? Did not at all understand 1 0.5 0 0 1 1.3 0 0 .024∗
Did not understand 3 1.5 1 2.0 2 2.6 0 0
Neutral 19 9.4 6 11.8 7 9.1 4 7.3
Understood 64 31.7 19 37.3 25 32.5 12 21.8
Completely understood 115 56.9 25 49.0 42 54.5 39 70.9
How much did you trust that the other people in the group were real? Did not trust at all 2 1.0 0 0 1 1.3 1 1.8 .023∗
Did not trust 3 1.5 1 2.0 2 2.6 0 0
Neutral 92 46.2 28 57.1 36 47.4 20 36.4
Trusted 55 27.6 12 24.5 22 28.9 16 29.1
Completely trusted 47 23.6 8 16.3 15 19.7 18 32.7
How much did you trust that the investigators were telling the truth about the study? Did not trust at all 0 0 0 0 0 0 0 0 .014∗
Did not trust 3 1.5 2 4 0 0 1 1.9
Neutral 66 33.5 16 32.0 35 46.7 11 20.4
Trusted 47 23.9 18 36.0 11 14.7 12 22.2
Completely trusted 81 41.1 14 28.0 29 38.7 30 55.6
As a result of your participation, how much have you benefited in learning more about sexual
health?
Very negatively 0 0 0 0 0 0 0 0 .025∗∗
Negatively 1 0.5 0 0 1 1.4 0 0
Neutral 54 28.0 7 14.3 25 34.2 18 33.3
Positively 78 40.4 23 46.9 27 37.0 19 35.2
Very positively 60 31.1 19 38.8 20 27.4 17 31.5
As a result of your participation, how much have you benefited in learning about HIV status? Very negatively 0 0 0 0 0 0 0 0 .010∗
Negatively 1 0.5 0 0 1 1.4 0 0
Neutral 58 29.7 10 20.0 20 27.0 26 48.1
Positively 73 37.4 20 40.0 30 40.5 13 24.1
Very positively 63 32.3 20 40.0 23 31.1 15 27.8
As a result of your participation, how much have you benefited in improving HIV care? Very negatively 1 0.5 0 0 1 1.4 0 0 .026∗
Negatively 2 1.0 0 0 2 2.7 0 0
Neutral 50 25.4 9 1.8 16 21.6 23 41.8
Positively 79 40.1 20 40.0 35 47.3 15 27.3
Very positively 65 33.0 21 42.0 20 27.0 17 30.9
an = 211. bn = 56. cn = 80. dn = 55.
∗Significant differences between 37+ and 18–26. ∗∗Significant differences between 27–36 and 18–26.
105
106 CHIU, MENACHO, YOUNG
TABLE 3
AORs for Age on Ethics Outcomes
95% Confidence
Interval
Outcomesa Group AORs Lower Upper p
How much did you understand the consent form and
study process?
27−36 1.30 0.64 2.62 .47
37+ 3.24 1.41 7.70 .0063
How much did you trust that the other people in the
group were real?
27−36 1.05 0.53 2.07 .89
37+ 3.00 1.41 6.55 .0050
As a result of your participation, how much have you
benefited in learning about HIV status?
27−36 0.73 0.37 1.43 .36
37+ 0.41 0.19 0.87 .022
Note. AOR = adjusted odds ratio. aAll models adjusted for educational attainment, prior HIV research experience, and group assignment (control vs.
intervention) and used 20–26 group as reference group.
of the consent form and study process and higher levels of trust in the other participants in the
group, respectively. In addition, individuals ages 37 and older benefited significantly less in learning about HIV status (adjusted odds ratio = 0.41) as a result of participating in the study than the
20–26 group (p = .022; Table 3).
DISCUSSION
To the best of our knowledge, this is the first article that looks at the impact of age in ethics-related
experience among participants in a social-media-based HIV study, as well as the first article to
look at this among participants in an LMIC. Contrary to our hypothesis, we found that, compared
to younger participants, older participants were more likely to trust that other people in the group
were real participants and not study personnel or fake profiles. In working with young adults (ages
16–22), Byron, Albury, and Evers (2013) identified young people’s self-presentation as a main
challenge in using social media for sexual health promotion. Although young social media users
share information about themselves frequently on social media (Madden et al., 2013), each action
(posts, photos, comments, etc.) is carefully planned to enhance their self-presentation online and
to avoid potential embarrassment or drama (Byron et al., 2013). Therefore, younger participants
might be more hesitant to share sensitive or personal information that might negatively impact
their self-presentation. Future social-media-based HIV interventions should focus on building
trust among participants, especially younger individuals, as this can help individuals to talk freely
about their sensitive experiences and questions.
This study also found that older participants, ages 37 and older, tended to understand the
consent form and study process more thoroughly than younger participants after adjusting for
their prior HIV research experience. Although the study assessed participants’ prior HIV research
exprierence, we did not assess if participants had participated in any research studies in the past.
One possible explaination is that older particiapnts might be more experienced with research
ISSUES OF SOCIAL MEDIA HIV INTERVENTION 107
studies and therefore understood the informed consent more thoroughly. Future research needs to
take participants’ prior research experience into consideration in order to tailor the information.
Another key finding was that older participants (37+) tended to benefit less from the study
in terms of learning about HIV status compared to younger participants ages 20 to 26. Research
has shown that older individuals tend to spend less time on social media in comparison to their
younger counterparts (Nielsen Holdings N.V., 2012). Because of financial, career, and familial
obligations, older participants might have limited time to browse and invest in the intervention
group. Future research could focus on identifying the different types of posts/discussions to best
engage participants with different levels of time commitment, such as personal stories, video
clips, private messages, and in-depth questions. Peer leaders should also be trained to take these
life events and experiences into consideration when interacting with participants of different age
groups.
The study is limited by recall bias. The ethics-related questions were assessed approximately
1.5 years after the study. Future studies should consider incorporating ethics-related questions
into regular assessment to monitor ethical issues throughout the study. In addition, the survey
used in the study has not yet been validated, and future research is needed to validate the survey. The results of the study also call for more qualitative research to understand participants’
experiences that we were not able to identify in a quantitative survey. Last, this study might lack
generalizability outside of Peru, Peruvian MSM, and HIV studies.
Social media use is increasing at an astonishing rate globally (Rainie & Poushter, 2014). Using
existing and popular social media technologies to reach large numbers of at-risk individuals
rapidly in LMICs might be a sustainable and cost-effective alternative in delivering health education. In this study, participants in general expressed low levels of concern about privacy, study
procedures, and key characteristics. However, issues regarding informed consent and trust building remain challenging in using social media for HIV prevention. To ensure participants’ safety
in using social media for HIV prevention, more research is needed to gain further understanding
of participants’ ethics-related experiences.
ACKNOWLEDGMENTS
We thank the researchers at the Center for Digital Behavior at University of California, Los
Angeles, for the input on this study.
FUNDING
This studied was funded by the Fordham University HIV and Drug Abuse Prevention Research
Ethics Training (National Institute on Drug Abuse R25 DA031608-01) and by the National
Institute of Mental Health (Young: K01 MH090884).
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