HIV-Positive Youth's Perspectives on the Internet and eHealth

Introduction

Globally, half of all new HIV infections occur among young people [1]. Currently there are an estimated 11.8 million youth aged 15-24 years living with HIV/AIDS [1]. In Canada, youth, particularly young women aged 15-29, represent a growing population who are being infected with HIV and AIDS [2,3]. As of June 2002, 13279 youth and young adults under the age of 29 had tested positive for HIV in Canada [4]. Due to under-reporting and under-diagnosis, as well as a long asymptomatic period, the actual prevalence of HIV in youth is likely much higher than indicated in official statistics. Surveillance data in the United States shows that although AIDS incidence is declining, there has not been a comparable decline in the number of newly diagnosed HIV cases among youth [5].

Despite this prevalence and incidence, there is a profound lack of resources for HIV-positive youth [6]. In particular, youth-­accessible resources outlining treatment options are scarce. Although material is available to help adults make treatment decisions, many of these resources are not appropriate for youth because they fail to address their unique clinical and developmental challenges. Furthermore, texts written for adults are often intimidating to younger audiences both because of language and literacy barriers and the less engaging ways in which information has traditionally been presented.

While many HIV-positive adolescents are at early stages in the course of their disease, health promotion messages are very important for them. Studies of adolescents living with HIV have shown high morbidity and mortality rates [7,8]. Other studies looking at the subjective health experience have documented that a quarter of those interviewed described their health as "fair" or "poor." [9] These findings illustrate the importance of treatment, self-care and prevention of co-infections for this population.

Treatment and Self-care Needs

HIV-positive youth are unique in their treatment and self-care needs. Many youth for whom antiretroviral medications are clinically indicated choose not take them [10]. Many do not access health care services. Youth may have perceptions of treatment that differ from adults [11], favoring a present quality of life over improving biological markers. In contrast to adults, peer influence has been identified as one of the key factors affecting youth treatment decision making [12,13]. Thus, there is a strong need for peer-driven resources about HIV/AIDS treatment, which are presented in youth-friendly formats. Moreover, these resources need to be sensitive to the ways in which self-care and treatment decisions are contextualized within the broader scope of these youth's lives.

Adolescence and early adulthood are the stages when lifelong health and social behavior patterns are formed. HIV-positive youth are particularly vulnerable during this period, as they experience disproportionate rates of: homelessness [14,15]; sexual and physical abuse [16,17]; financial difficulties [18,21]; addictions [22]; legal concerns [20,23]; social isolation and stigma [9,23]; and mental health concerns [16,24]. Often, the immediacy of these social and structural determinants of health may overshadow worries about HIV infection [20]. This results in a need for information that is sensitive to the unique situations of HIV-positive youth, while framing their experiences within the perspective of normal youth development to avoid further marginalization and stigmatization.

Potential of the Internet

There is a growing literature that emphasizes the potential of the Internet, not only for health promotion [25,26], but also as a community development tool [27,28]. The Internet provides innovative ways of engaging youth, allowing opportunities to assess and address their needs and to provide them with a means of offering each other support. Research has demonstrated that computers can attract young adults to participate in health assessments and behavior change programs, in ways and numbers that are not possible using traditional approaches [29,30]. Internet technology can be easily updated, is available 24 hours per day, and enables self-directed learning. It can be reached by those in remote and isolated settings, facilitates repeat use and can be anonymously accessed. Finally, information presented online can be of a highly graphical, interactive nature, and thus be able to reach users who may not have age-appropriate literacy skills [30].

In 1994, only 17% of young people were estimated to be using the Internet. Data from 2000 however, suggest that between 92% and 99% of Canadian youth used the Internet regularly [31]. Indeed, the digital divide in Canada is narrowing. Among households with less than $20,000 incomes, 77% of youth reported regular Internet use in 2000. Given the rapid growth of Internet use, this number has probably grown considerably [31]. American youth are also online: 73% of 12-17 year olds in the US use the Internet regularly [32], and 95% of all teens have ever been online [33]. Generally, youth are more likely than their adult counterparts to use the Web and are 'early adopters' of technology [34].

Research with adult populations living with HIV has demonstrated that computer-based health services can improve a patient's quality of life and promote more efficient use of health care systems [35-37]. Furthermore, qualitative studies have shown that HIV-positive adults use the Internet for a wide variety of functions including communication, advocacy and commerce [38,39]. Kalichman found that individuals with HIV who used the Internet were more likely to be better informed about HIV treatment and self-care than those who did not [40,41]. However, he also found that there was a "digital divide": those accessing the Internet were more likely to be better educated and report higher incomes [40-41].

Despite the growing popularity of the Internet as a health information resource [43], little research has been conducted on the feasibility of using the Internet as a health promotion strategy with HIV-positive youth. One of the aims of this study was to investigate Internet access, use and acceptability among this vulnerable and marginalized population.

Methods

A community-based participatory research model [44,45] was used to assess the needs of Canadian HIV-positive youth. A stakeholder group of HIV-positive youth (trained as community researchers) and supporting professionals collaboratively developed the research design, instruments and protocol. Qualitative methods were selected for their ability to explore issues 'in-depth' and allow participants to express their thoughts and feelings 'in their own words.' Thirty-five interviews were conducted with a diverse group of HIV-positive youth across Ontario. The interviews were semi-structured and probed around four main areas of interest: a) future goals; b) social support; c) treatment and self-care issues; and d) online interests and behaviors. In addition, brief structured surveys were administered at the conclusion of each interview. Surveys asked about demographics (e.g., age, sex, sexuality, etc.) and Internet use. This paper will focus on the online component (other findings have been reported elsewhere).

Using a maximum variation sampling scheme, a sampling frame was developed that ensured diversity in age, sex, sexuality, age of diagnosis, ethno-racial identity and geographic region [46]. Youth were recruited through AIDS-serving organizations, youth-serving organizations, hospitals, and health clinics. In some cases, youth workers and health care providers approached young people in their case load and told them about the study. In other cases, recruitment flyers were simply posted. Also, young people who had already participated were encouraged to tell other HIV-positive youth who they knew about the study (snowball recruitment).

In all cases, youth approached the research team directly. Participation was limited to youth who: a) were between the ages of 12 and 24 years; b) were identified as HIV-positive through self-report; c) had the ability to communicate in either English or French; and d) had lived in Ontario for the last three months. Each received a $20 honorarium for participation. Standard procedures were employed for obtaining informed consent (approved by the University of Toronto Human Subjects Ethical Review Committee and the Research Ethics Review Board at The Hospital for Sick Children). Two interviews were conducted in French; 33 interviews were conducted in English. Table 1 provides a breakdown of our final sample.

Interviews lasted between 35 and 95 minutes. Generally, they were taped and transcribed verbatim. In one case, a youth did not want to be audio-taped and copious notes were taken during the interview. In another case, a youth wanted to write out his own answers rather than talking into a tape-recorder. At the conclusion of each interview, youth were asked to fill out a brief demographic survey and invited to continue to participate in the research project. In addition, they were provided with a list of youth-friendly health and service agencies in their area.

A modified grounded theory interpretive approach guided the analyses [47-49]. A sub-sample of 10 transcripts, stripped of identifying names and places, were returned to the stakeholder group of HIV-positive community youth researchers and professionals for preliminary analysis. Based on emerging themes, commonalities and major differences, a preliminary coding framework was developed [50]. Data were coded by two youth community researchers using Nud*istqualitative data analysis software [51]. After coding the first 10 transcripts, issues with the coding scheme were brought back to the larger stakeholder group and the scheme was refined and subsequently applied to the remaining transcripts.

Coded data were returned to the larger team for analysis. Members of the team were asked to fill out a work sheet for each code asking:

1. What was the range of experience here? What are the different ways that youth talked about their experience?
2. What are the general patterns that emerged? Generally how would you summarize what most young people had to say?
3. Which one or two quotes best summarize what you see here?

Weekly meetings were held to go over worksheets and discuss main themes, relevance and implications for each code. Collectively, the team's notes were discussed and summary tables constructed to capture the most common themes, gaps and issues.

Results

Five main themes were identified with respect to the youth's use of and interest in the Internet as a health promotion strategy. These include: (1) high rates of Internet use and access; (2) issues around public and private terminals; (3) their use of the Internet primarily for communication and entertainment; (4) the rarity of health information seeking behavior in this group; and (5) wanting "one-stop shopping" from an e-health site.

High Rates of Internet Use and Access

"I'm online like all the time." – young man

All of the youth we interviewed had used the Internet. Thirty four percent reported being online daily, 37% weekly and 29% said they were online monthly or occasionally. In addition, nearly half the youth we spoke with used instant messaging programs and two-thirds of the youth documented that they used e-mail at least once per week (Table 2).

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These young people logged on from a wide range of public and private locations (Figure 1). Community centers, youth-serving organizations, AIDS-serving organizations, shelters, and public libraries were important points of Internet access both among housed and street-involved youth. Those who were actively street involved discussed the importance of using the Internet, particularly e-mail, as a vital communication mechanism. Nearly all the youth with a history of street involvement cited being online daily or weekly. While the quality of access (in terms of speed, privacy and freedom to surf) varied across locations, most youth were active users of public Internet terminals and access points.

Youth who documented lower rates of Internet use did not see access as the major barrier. Rather, these young people simply preferred other modes of communication and/or gathering information. As one young woman stated: "Ah, well honestly, this is nothing to do with HIV, but I rarely use it... I don't really have the patience for the Internet. I only use it on real necessity." She preferred using the telephone for communication and reading books for gathering information.

Issues Around Public and Private Terminals

For many youth, private Web access was not a reality. Many were street-involved, some lived in subsidized housing and others lived in low income environments where Web access was not available at home. Thus, youth primarily talked about accessing the Web from public locations (Table 3).

Youth had mixed feelings about public access. Some saw the public portals as having an added sense of security and anonymity. In terminals where usernames were not required, they could feel free to browse the Web and search for confidential information without fear that they would be 'tracked down,' 'discovered' or 'outted' as being HIV-positive. They felt that because so many people used public access terminals all the time, their information or 'log histories' would be lost in the mix. One young person that had Internet access at home described searching for sensitive information at the library so her dad would not find out.

By contrast, other young people complained about the lack of privacy in public terminals. In particular, in libraries or shelters where computers were close together or peer networks were close-by, searching for sensitive or confidential information was not considered a possibility. Many youth were extremely leery about issues of confidentiality and were afraid that if they searched for information about HIV in public, others would find out about their status. Youth who needed special usernames or ID codes to access public terminals (e.g., at school) were extremely reluctant to search for confidential information.

Generally, youth that had home access often felt safer using private Internet access points than public ones. However, some youth acknowledged that even in the "privacy" of their own homes – they were not totally 'safe.' These youth were worried that their parents, friends or siblings might be able to trace their 'online movements.' Others worried that through the use of 'cookies' and other new technologies, others might be able to find out confidential information about them. As such, even 'safer' spaces were not seen as completely 'safe' or 'private.'

Youth Use the Internet for Communication and Entertainment

"I use it for everything and anything you can possibly think about in the world, and some things I'm not going to mention over tape." – young man

Overwhelmingly, these young people used the Internet for communication (chat, message boards, e-mail, instant messaging). They talked at great length about their love of these Internet communication tools. Many of them had multiple e-mail addresses, and some talked about having multiple Internet identities.

These youth also spent a good deal of time surfing the Internet for entertainment purposes (e.g., games, music, sports, movies, pornography). For many, the Internet was seen as 'something to do' or a good alternative to television. Many of the young men mentioned interactive gaming. Generally, the Internet was seen as a way to have fun. As one young man put it, "I guess, like, the Internet for me is just like a time for playing games and chatting on the net."

These youth also documented using the Internet to search for information for school and work. Many were savvy Internet users and were able to describe complex search strategies for finding the information that they were looking for. Despite being sophisticated Internet users, few used to Internet to seek out health information.

Health Information Seeking Behavior is Rare

"Cause half the time I don't really know I have HIV because I don't think about it, 'cause it's not like something you really think about 'cause I'm doing well." – young woman

Youth rarely talked about the Internet as a place where they sought health information (Table 4). A few young people described using the Internet regularly to learn about HIV, treatment options and community resources. These youth were 'expert' searchers; they were online regularly and knew how to access the information they were looking for. One young man in particular, was on HIV peer support sites regularly and saw his 'virtual friends' as important sources of social support and health information. However, these youth were in the minority.

When probed about why most did not use the Internet to access health information, they had a variety of responses. For some, the Internet was a place to 'escape' to. They saw the Internet as being primarily about entertainment (e.g., "I use the Internet to play card games and interact with other people.") For others, seeking health information was not seen as a priority because HIV was a relatively small part of their identity. As one young man explained, "It is, after all, only three letters." A small subset of youth worried that if they searched for health information about HIV online, someone (their ISP provider or others around) might find out about their HIV status. One young woman had adopted strategies for managing these issues, "[at the agency] the computers are so close and there are a lot of people I know there...but at the library I feel safer." Other reasons that youth provided included: preferring other methods of getting information; hating computers; not knowing how to access appropriate information; and not being ready yet to find out more information (i.e., too early after diagnosis).

Other youth who had experimented with using the Internet for health information complained that: a) there was too much out there and it was hard to prioritize and figure out "what's what"; b) most of the information that was out there was unintelligible and c) they found the experience somewhat overwhelming. Some adopted strategies of asking friends or family to search with them and act as translators or interpreters. As one young man described, "It was helpful because my dad was there. If I had been by myself, I probably wouldn't have understood anything. That's why you need to direct stuff towards teens."

Youth Want "One-Stop Shopping" From an eHealth Site

"Like basically, one-stop information location for positive youth. Like everything and anything you can put in there, but put it into a format that youth can understand, right? Something to create and have some fun with!" – young man

Despite the Internet's rare use for health information, when asked if they would visit a Website specifically designed by and for HIV-positive youth, most of the young people we interviewed were extremely enthusiastic about the possibilities of the Internet for health promotion. Nine percent said they would use a site specifically developed for positive youth everyday. Twenty-nine percent said they would use it regularly, 43% said they would use it once in awhile and 20% said they would never use such a site. Youth in the "once in awhile" category were generally enthusiastic about the concept. While they did not see their HIV status as being a major part of their identity, they were nevertheless interested in being able to access relevant content when appropriate (e.g., when they had specific questions). The minority of youth that would not access these resources gave the following reasons. They were either: (a) not interested in HIV health information resources generally; (b) unenthusiastic about the Web; or (c) concerned about privacy.

Youth were extremely specific about what they wanted from e-health strategies targeted towards them (Table 5). First and foremost, young people wanted an opportunity to share and connect with each other; chats and message boards were seen as the main attraction to heading towards a site specifically for HIV-positive youth. Nearly every young person we spoke with recommended the creation of a chat space. Many youth described feelings of isolation and loneliness and felt that the opportunity to connect with other youth in similar circumstances could be extremely valuable. They talked about the importance of connection and prioritized chats and message boards over other possible Internet information applications (e.g., didactic information). Many of them worried, however, about "prowlers" and sexual solicitations in sites that were geared towards youth audiences and were concerned about how those might be managed.

Youth embraced the concept of "one-stop shopping" or one site that would be able to answer all their questions. Many talked with frustration about how so many sites 'out there' that dealt with HIV were not 'youth-friendly' or 'user-friendly' and were hard to understand. They did not enjoy getting 'lost' in complicated links.

Study participants wanted the look and feel of a site geared towards them to be discreet and not 'obviously' about HIV so that they could access it in public forums. In order to protect their privacy, youth did not want to be asked for their real names. They were happy to provide nicknames and felt that passwords provided added protection. Also, they wanted to see privacy or confidentiality agreements that assured them that their confidentiality and anonymity would not be compromised.

Discussion

Our study found that HIV-positive youth are online and are Web savvy users. A surprising finding was that the youth who were perhaps most impoverished and marginalized (those who were either currently or had a history of being street involved) demonstrated high rates of Internet use. This is in sharp contrast to American findings of adult populations living with HIV [41,42].

This study supports evidence from investigations of adults living with HIV that communication is a primary reason that people living with HIV use the Internet. However, unlike adults, our study did not identify advocacy as something that youth did online. Information seeking was secondary [38,39].

Although they go online with regularity, the HIV-positive youth in our study rarely searched for health information. This was due to personal and institutional barriers including: lack of interest; difficulty assimilating information geared towards adults; fear of disclosure; and inadequate private access. Our findings that youth living with HIV use the Internet primarily for communication and entertainment is consistent with other studies that have looked at Internet use among more general youth populations [52]. In addition, the problems documented around quality of access are also found among other youth populations [53].

Results of a national needs assessment conducted by the Canadian AIDS Society in 2000 concluded that, "Nationally...there was a huge lack of services for HIV-positive youth. These missing services ranged from support groups, to accessible treatment information, and basic living necessities for positive youth." [6] Similarly, Toronto's Positive Youth Outreach 2000 Survey found that youth ranked treatment information amongst their top six most pressing needs [18]. Furthermore, they cited the Internet as one of the best ways to give them information. Identifying a need for further venues of social support, these youth documented that Chatrooms/ Listserves, phone lines and social events were the top three services they wanted. This study confirmed that, indeed, the Internet may be a viable way to impart health and treatment information, provided the content, look and feel of such materials were created and presented in 'youth friendly' formats.

One limitation of this study is that we recruited young people from youth- and AIDS-serving organizations and health care settings. As such, the youth we spoke to were generally well connected to health and/or social services, which may have provided them higher rates of public Web access. The qualitative nature of our study also makes it difficult to generalize our results to all HIV-positive youth.

Nevertheless, this study suggests that if content were developed specifically for HIV-positive youth and marketed to them, they would be interested. Targeting young HIV-positives for health promotion messaging may be both feasible and desirable [54]. Given the success of computerized and online health promotion strategies with other populations, this may prove to be an important health promotion strategy.

Health care providers should be aware of the need for providing information to HIV positive youth in non-traditional formats. Health care providers may want to familiarize themselves with youth-friendly resources that are already available (e.g., http://www.livepositive.ca or http://www.youthhiv.org/). Referring youth clients to appropriate Web sources may be an important additional tool for health care providers and health promoters for supplementing 'regular care'. Finally, the onus is on e-health developers to better understand the needs of this vulnerable population and continue to expand and create appropriate, relevant and up-to-date content.