Globally, half of all new HIV infections occur among young people. Despite this incidence, there is a profound lack of resources for HIV-positive youth.
To investigate Internet access, use and acceptability as a means for health promotion and health service delivery among HIV-positive youth.
A community-based participatory approach was used to conduct a mixed methods research study. Thirty-five qualitative in-depth semi-structured interviews were conducted with youth (ages 12-24) living with HIV in Ontario. Also, brief structured demographic surveys were administered at the time of the interview. A stakeholder group of youth living with HIV, professionals and researchers collaboratively analyzed the data for emerging themes.
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. HIV-positive youth were enthusiastic about the possibility of content that was developed specifically to target them and their needs. Also, they were keen about the possibilities for increased social support that youth-specific online chat rooms and message boards might provide.
Given high rates of use, access and interest, the Internet provides an important way to reach young people living with HIV using health services and health promotion programs. The onus is on e-Health developers to understand the particular needs of HIV-positive youth and create relevant content.
Globally, half of all new HIV infections occur among young people [
Despite this prevalence and incidence, there is a profound lack of resources for HIV-positive youth [
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 [
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 [
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 [
There is a growing literature that emphasizes the potential of the Internet, not only for health promotion [
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 [
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 [
Despite the growing popularity of the Internet as a health information resource [
A community-based participatory research model [
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 [
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.
Sample characteristics
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Male | 22 (63%) |
Female | 13 (37%) |
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12-15 | 6 (17%) |
16-19 | 12 (34%) |
20-24 | 17 (49%) |
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LGBTQ1 | 8 (23%) |
Heterosexual | 27 (77%) |
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Last 12 months | 15 (43%) |
Longer than 12 months | 13 (37%) |
Perinatal | 7 (20%) |
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Yes | 24 (68%) |
No | 11 (31%) |
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White, European, Canadian | 19 (54%) |
African/Caribbean | 10 (29%) |
First Nation/Aboriginal | 3 (9%) |
Unknown/Other2 | 3 (9%) |
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Large Urban | 28 (80%) |
Small Urban/Rural | 4 (11%) |
Northern | 3 (9%) |
1 Lesbian, Gay, Bisexual, Transsexual, Queer or Questioning |
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 [
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:
What was the range of experience here? What are the different ways that youth talked about their experience?
What are the general patterns that emerged? Generally how would you summarize what most young people had to say?
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.
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.
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 (
Frequency of technology use
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Daily | 12 (34%) | 8 (23%) | 13 (37%) |
Weekly | 13 (37%) | 9 (26%) | 10 (29%) |
Occasionally or monthly | 10 (29%) | 10 (29%) | 9 (26%) |
Never | 0 (0%) | 8 (23%) | 3 (9%) |
Where youth are accessing the Internet
These young people logged on from a wide range of public and private locations (
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.
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 (
Public and private access
Free access Anonymous Freedom |
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No real privacy Don't want to be publicly 'outted' as HIV positive Fear of emotional responses and having to 'deal' with others Usernames limit confidentiality |
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better, but not 'totally' safe |
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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.'
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.
Youth rarely talked about the Internet as a place where they sought health information (
Searching for health information
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Too early in diagnosis |
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The Internet is a place to 'escape' |
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Confidentiality |
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Prefers other methods of getting information (e.g., talking to health care providers, books) |
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Doesn't like the Internet or computers |
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Doesn't know how |
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A first stop for information |
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Some needed help negotiating information (friends, parents) |
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An available resource |
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Online daily, getting peer support |
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Savvy searchers |
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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."
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.
What youth want from an eHealth site
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Chat Rooms |
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Message Boards |
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Treatment |
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Resources |
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HIV/AIDS |
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Harm reduction |
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'Health' generally |
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Games, quizzes |
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Q & A |
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Nicknames |
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Password |
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Confidentiality Agreements |
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Discreet Look |
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Protection from prowlers |
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Youth were extremely specific about what they wanted from e-health strategies targeted towards them (
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.
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 [
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 [
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 [
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." [
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 [
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.,
The authors thank the youth and community partners for their assistance in the data collection. This study was supported by a grant from the Ontario HIV Treatment Network.
None declared.
What are your hopes, goals, and aspirations for the future?
What might help you to achieve your goals? What could you do for yourself?
Have your goals changed as a result of learning your HIV status? How?
What kinds of programs do you wish were around for young people like you?
How prepared do you feel to take care of your health?
What kinds of problems do you face when taking care of your health?
Do you feel like you have choices about treatment? Do you know what your choices are?
What kind of information would you like on different treatment options for young people living with HIV/AIDS?
What are some of the 'health topics' that you feel like learning more about?
How can you be supported in making treatment or self-care decisions?
What advice would you have for other HIV positive youth that are trying to make treatment decisions?
Where do you feel comfortable going for health information?
Who do you turn to for moral/social support?
How open are you about your HIV status with people in your life?
Do you ever feel lonely or excluded because of your HIV status?
Even though you are a diverse group of individuals - what common experiences do you think HIV+ youth might share?
Do you ever use the Internet? What for? (Do you ever use it to get health info?)
Do you know about any sites are out there for HIV+ youth? Do you use them? For what? Do you feel safe using them? Why/why not?
If we were going to create a new Website for HIV positive youth in Canada - what sorts of things should we be sure to include? (What content/information would you like to see on the site? e.g. counselors, chat rooms, information)
What would make you feel safe accessing it? Do you have a safe place to access it from? What sorts of things could we do to protect your privacy? (Would you feel safer accessing the site if it had a privacy/password age before you get to the homepage?)
Loving and supportive
Antagonistic
Abusive, dysfunctional
Other
Faith - they know best
Frustration
Other
Friends
Other youth generally
To other youth with HIV
Other
Church & Spirituality
ASO's
Youth Orgs
Youth Shelters
Counsellors, Case workers
Hospital clinics
School
Kids Help Phone
Other
Living day by day (not future oriented)
Uncertainty (in general)
Long term vs. short term
About health
About relationships, partners
About family of origin
About starting own family
About school
About career, employment
About financial stability
About housing
Yes - why
No - why
I'm a normal kid - no big deal
Regrets, Guilt
Grief
Shame - HIV as "dirty" or "foreign" or "bad"
Angry, resentful
Small part because I am overwhelmed with everything else
Just is a small part of me
"death sentence", feeling mortal
conspiracy theories
Stigma
Acceptance or integration of HIV in life
Other
Prostitution
Drug use
Abuse
Hygiene
Feelings about living in shelters
Rules
Panhandling
Respect
Other
Confidentiality
Bad experiences/Stigma/Discrimination
Good experiences
Why should I tell you? (I wouldn't if I had a growth on my foot)
Other
Stay positive
Think before you act
Find people you trust
Other
Want to know more about..
Fear of finding out more...
Lack of interest...
Saturated (savvy about what is out there, accessing services)
Where I go to get info
Eating disorders
Hygiene
Vitamins, nutrition
Addictions & substance use
Violence/abuse
Mental health issues
Asthma
STDs
Cancer
SARS
Other
Diet, vitamins, nutrition
Exercise
Sleep
Choosing healthy, supportive relationships
Taking care of yourself is tiring, exhausting, hard work
Getting help
Apathetic around self-care
Alternative therapy (e.g., acupuncture)
Other
Why take it?
Knowledgeable/Informed
Have no choice
Side effects & concerns
Taking medicine as a young person
Not ready for it
Barriers to accessing meds
Figuring out what is credible
Avoiding it
Adherence, interruption
Other
Chat/communicate
Entertainment
Work (job or school)
Health info
Public Access Good
Public Access Bad
Private access
Presentation of site
Passwords and confidentiality
Protection from prowlers
The Internet as anonymous, safe
The Internet as unsafe