Perceptions of HIV-Related Websites Among Persons Recently Diagnosed with HIV

Abstract

Many HIV-positive persons use the Internet to address at least some of their needs for HIV-specific information and support. The aim of this multimethod study was to understand how a diverse sample of persons who were recently diagnosed with HIV (PRDH) used the Internet after an HIV diagnosis and their perceptions of online HIV-related information and resources. HIV-positive persons (N = 63) who had been diagnosed since the year 2000 were recruited primarily through HIV-related websites and HIV medical clinics. One third of participants (33%, n = 21) were gay or bisexual men, 25% (n = 16) were heterosexual men, 32% (n = 20) were heterosexual women, and 10% (n = 6) were transgender women (male to female). Semistructured interviews and brief postinterview surveys were used to collect qualitative and quantitative data. Qualitative findings suggested that the most appealing websites to PRDH included those that: (1) provided usable information on topics of immediate concern; (2) used accessible formats that were easy to navigate; (3) were perceived as trustworthy, and (4) provided access to diverse perspectives of persons living with HIV/AIDS. Topics that PRDH found most useful included various medical treatment-related issues, tools for coping with depression and fear, and learning how others cope with HIV. Incorporating the perspectives of HIV-positive persons into the design and content of HIV-related websites is important to enhance their appeal for this diverse and growing population.

Introduction

A pproximately 55,400 persons in the United States are infected with HIV annually.¹ Fifty-six percent of these annual new infections occur among men who have sex with men.² Heterosexual transmission, including male-to-female and female-to-male, has accounted for 30% of annual new infections.¹ Although they represent a small percentage of the overall HIV epidemic, male-to-female transgender women (TGW) are disproportionately affected by HIV.³

Upon receiving an HIV diagnosis, persons living with HIV/AIDS report a wide range of needs that include access to HIV-specific health information and support.^4
–6 Some of these are cross-cutting issues, whereas others appear to be more population-specific. For instance, in a survey of patient education needs among HIV-positive clinic patients, Sengupta and Roe⁴ found that nearly all (69/70) indicated a need for more comprehensive services. Support groups and stress management tools were also identified as cross-cutting needs among the HIV-positive persons they surveyed.⁴ In a survey assessing needs of HIV-positive persons in Britain, 75% of respondents reported unhappiness with at least one of the 17 issues the survey addressed. The most frequently self-reported problems in the preceding 12 months included anxiety/depression (67%), sleep disturbance (59%), and sexual problems (51%).⁷

On the other hand, some needs may differ between recently diagnosed MSM, heterosexuals, and transgender persons. For example, the need for childcare services is of particular concern among HIV-positive women.⁴ Especially at the time of diagnosis, women living with HIV have more frequently reported needing information, support, and assistance from health care providers and friends.⁵ In a survey of HIV-positive MSM, men expressed interest in meeting other HIV-positive persons and in a wide range of topics related to health management, sexually transmitted diseases (STDs) and HIV prevention.⁶ The self-identified needs of transgender persons and heterosexual men living with HIV have been less frequently reported.

Many HIV-positive persons use the Internet to address at least some of these informational, support, and health-related needs. HIV-positive persons surveyed by Chou et al.⁸ reported that their sources of self-care information included personal experiences (34%), others in their personal network (38%), health care providers (18%), and community resources such as local support groups, Internet-based sources, and television (19%). Internet-based sources of antiretroviral treatment information have been cited among the most important sources of information that HIV-positive persons use to inform treatment decisions.⁹ HIV-positive persons may also use the Internet as a means of self-empowerment through locating opportunities to engage in advocacy, to obtain and provide social support, and as a means of escape.^10,11 Although the Internet may be used by some to facilitate potentially harmful behaviors such as seeking casual sex partners or partners who are willing to engage in unprotected sex,^12

–15 use of the Internet by HIV-positive persons can also be an active coping strategy that is associated with better HIV treatment adherence and other indicators of health.¹⁶

The Internet may therefore be a critical first source of information as persons recently diagnosed with HIV (PRDH) acclimate to the diagnosis, develop new relationships with medical providers, and identify new social networks or strengthen existing ones. PRDH may have difficulty, however, in gaining access to information relevant to their particular stage of disease (e.g., acute retroviral phase versus AIDS diagnosis) or other pertinent issues. Few studies have examined how needs of persons living with HIV may change over time or differ depending on how long persons have known their HIV status.

A very large amount of HIV-related information is available online, with most websites serving as “information clearinghouses” that do not necessarily present information according to whether, or for how long, a person has been living with HIV.¹⁷ Ease of use and clarity of information are important factors that influence whether persons will use the Internet for health information.¹⁸ In one recent study, 71% of HIV-positive respondents reported that it was easy to feel overwhelmed by HIV/AIDS information.¹⁹ Factors such as the structure and format of online information may influence the extent to which HIV-positive individuals, particularly PRDH, are able to use these resources. Even high-quality information, if presented in an unsorted or overly complex format, may add to the feeling of being overwhelmed.

Moreover, HIV-related websites provide varying indicators of credibility, and many provide no such indicators.¹⁷ Benotsch et al.²⁰ found that HIV-positive persons were less critical of information obtained online than were medically trained observers, and may have been aware to some extent of their inability to distinguish between high- and low-quality information. With relatively little prior knowledge of HIV, it may be especially difficult for PRDH to identify websites containing credible information. Misleading information or sites with conflicting information may lead to confusion and errors at a time when obtaining clear and correct information is vital.

Accessibility of the Internet also remains an issue for HIV-positive persons, as factors such as health literacy, education level, having a home Internet connection, and income level are strongly associated with whether HIV-positive persons use the Internet for health information.^16,21,22 One recent survey found that only 52% of low-income PRDH had ever used the Internet and only 28% had ever used it for health-related information.²² However, numerous surveys indicate that the Internet has become more widely accessible and use of the Internet for health information continues to steadily increase.^23
–25 PRDH with more limited access to the Internet may also obtain Internet-based information and support in indirect ways, such as through their formal or informal caregivers.²⁶

Given the prominence of the Internet as a potential source of HIV-related information, more research is needed to understand how this information is used by PRDH. The aim of this multimethod study was to understand how a diverse sample of PRDH used the Internet following their HIV diagnosis and their perceptions of the HIV-related information and resources that they were able to obtain online.

Methods

Participants

The present study was conducted as part of a larger, multicomponent formative research project designed to examine how the Internet serves the health and prevention needs of PRDH.²⁷ From September 2007 through June 2008, HIV-positive persons were recruited through brochures and flyers posted at HIV clinics, banner ads on websites and in email newsletters sent to members of HIV-related websites, and word-of-mouth. Eligible participants were at least 18 years of age, living in the United States, and self-identified as one of the following: (1) gay or bisexual man (GBM), (2) heterosexual man, (3) heterosexual woman, or (4) male-to-female transgender woman (TGW). We attempted to recruit up to 20 persons within each of the four groups to include a range of cases that illustrate a maximum variety of experience, consistent with grounded theory research methods.^28,29 GBM and heterosexual women were eligible if they had been diagnosed with HIV in the past 12 months. As heterosexual men and TGW were more difficult to recruit and we had found so little prior research on their HIV-related uses of the Internet, we broadened eligibility criteria for persons in these groups such that they were deemed eligible if they reported having ever been diagnosed with HIV.³⁰ However, given that the aim of the present study was to examine the perspectives of recently diagnosed persons regarding their experiences with HIV-related websites, we included in this analysis only those diagnosed since the year 2000. Persons who reported little to no usage of the Internet were not excluded from the study.

Design

Persons who received information about the study called a toll-free study telephone line, at which time they were screened for eligibility by a member of the study team. Information on demographic characteristics and Internet usage was collected during the screening. If the person was determined eligible, the study staff member obtained his or her informed verbal consent and then transferred the participant to a trained telephone interviewer. Semistructured qualitative interviews and a brief quantitative survey were administered by the telephone interviewer. Participants received $50 cash in compensation for their time. Institutional Review Boards of the Centers for Disease Control and Prevnetion (CDC) and the University of Minnesota, as well as a community review board convened for this study, approved all research methods and materials.

Measures

Qualitative

The semistructured interview topics included: (1) reactions to receiving their HIV diagnosis and immediate needs (e.g., informational, medical, emotional); (2) sexuality-related topics (e.g., how HIV affects their feelings about sexuality and about safer sex); and (3) questions related to the content and features of HIV-related websites they have used (e.g., How did you use the Internet after you were diagnosed with HIV? Which websites do you use often? What keeps you coming back to the websites that you use? Was there anything you looked for that you could not find online? What features of websites are most attractive or easy for you to use?). These questions were designed to elicit as much detail as possible on the kinds of activities they engaged in and information they sought from HIV-related websites, as well as suggestions for improvements in content and design. The present study examined participants' discussion of their interactions with and perceptions of HIV-related websites.

Quantitative

At the end of the semistructured interview, participants were presented with a brief series of short-answer questionnaire items. They were asked to rate the perceived usefulness of 46 health-related information topics that were grouped into the following categories: physical health, mental and emotional health, sexual health and decision making, romantic and social relationships, practical issues or problems, medical and treatment issues, and communication issues. The 46 topics were developed from a prior needs assessment,³¹ from reviews of the literature, and through consultation with HIV prevention experts. Participants were asked to rate each topic on response scales of 1 = not at all useful to 10 = extremely useful. These items are presented in Table 1.

Table 1.

Mean Scores and Ranking of Usefulness among Forty-Six Topics for an HIV-Related Website by Persons Recently Diagnosed with HIV (n = 63)

	n	Mean	SD	Overall Ranking ^a
Medical and treatment issues
Latest recommendations for taking HIV medicine	63	9.75	0.62	1
Available medicine to help manage HIV	63	9.73	0.68	2
Common treatment side effects and tips for dealing with them	63	9.71	0.63	3
How HIV medicine might affect my life	63	9.63	0.70	4
Information on upcoming clinical trials	63	8.98	1.70	14
Mental or emotional health
Ways of coping with depression	63	9.33	1.12	5
Ways to feel better about myself	63	9.03	1.4	13
Ways of coping with anxiety	63	8.87	1.58	17
Ways to improve how I feel about my body	63	8.27	2.1	26
Ways of coping with denial	62	8.18	2.12	30
Ways of coping with abuse	63	7.32	2.82	38
Exploring elements of religiosity/spirituality	63	6.92	3.15	43
Communication issues
Having someone to talk to about fears and concerns	63	9.32	1.43	6
How other HIV-positive persons coped with their HIV	63	9.29	1.43	7
Connecting with others who are HIV-positive	63	8.97	1.9	15
Connecting with others who are at the same phase of HIV infection as me	63	8.40	2.30	23
Telling other adults of my HIV status	63	8.00	2.50	33
Dealing with my own diagnosis and a partner's or relative's HIV-positive status	62	7.94	2.99	34
Telling my children about my HIV status	61	7.25	3.37	40
Sexual health and decision making
Developing long term plan for not passing HIV to others	63	9.25	1.66	8
How to negotiate safer sex	63	8.68	2.41	19
Sexual options for making sex safer	63	8.56	2.35	20
Coping with my sexual behavior	63	8.37	2.25	25
How to talk about condoms and safer sex	63	8.32	2.30	27
Understanding my sexual history and how it affects me	63	8.29	2.30	29
How to talk about sex	63	8.06	2.70	32
Exploring the relationship between sexuality and spirituality	63	7.3	2.99	39
How to use a condom correctly	63	7.1	3.37	41
Usefulness of information on being a better lover	63	6.49	2.90	44
Romantic and social relationships
Building healthy friendships	63	9.11	1.38	9
Keeping a long-term relationship	63	8.95	1.66	16
Building healthy sexual relationships	63	8.57	2.23	21
Developing an intimate relationship	63	8.38	2.17	24
Practical issues affected by health status or problems
Dealing with financial security	63	9.11	1.79	10
Dealing with job loss	63	8.32	2.45	28
Dealing with housing needs	63	7.92	3.02	35
Dealing with child care/other family issues	63	6.97	3.54	42
Planning to have children (pregnancy/fertility issues)^b	19	6.53	4.06	45
Family planning/preventing having children	62	5.81	3.66	46
Physical health
Opportunistic infections	63	9.06	1.36	11
The biology of HIV	63	9.02	2.04	12
Nutrition	63	8.81	1.67	18
Aging and HIV	63	8.32	1.92	26
Dental care	63	8.14	2.21	31
Death and dying issues	63	7.79	2.50	36
How to evaluate my alcohol and drug use	63	7.46	3.13	37

Rank order of all topics is from the highest (1) to the lowest (46) mean score.

This item was asked only of heterosexual women.

Topics are grouped by subtitle and ordered from highest to lowest mean score within each subtitled group. Scores for each item ranged from 1 = not at all useful to 10 = extremely useful.

After the health-related topics, participants were asked to rate the self-perceived importance of using websites containing opportunities to interact with other persons, including those with expertise in medicine or HIV/STD prevention, potential dating or sex partners, and other HIV-positive persons. For these items, participants responded using a response scale of 1 = not at all important to 10 = extremely important. Last, participants were asked to select the type of information on a website (general HIV information, information specific to “people like me,” or both types) that would be most appealing to them.

Analysis

Each telephone interview was digitally recorded, transcribed verbatim by a member of the research team, and proofread by a second member of the research team to ensure accuracy. The transcriptions were imported into NVIVO 8.0 for analysis, at which time potentially identifying information (e.g., proper names) was removed from the transcripts. Descriptive characteristics (e.g., age, identity group, racial/ethnic group) were drawn from the screening data.

To examine how participants discussed their experiences with using the Internet after an HIV diagnosis, the primary author applied a grounded theory approach.^25,28 Grounded theory is a process of discovering general explanatory principles (i.e., theory) through the systematic analysis of research data.²⁹ In the present study, transcripts were first read line-by-line to identify grammatical segments (the units of analysis for text coding) made in reference to uses of the Internet. Then, these grammatical segments were topic-coded by the primary author, a process referred to as “open coding.”³² Next, the primary author analyzed the relationships between codes as inducted from the text (i.e., axial coding) and developed a conceptual model.³³ Four themes emerged from this analysis, which (along with quotes) form the structure of the discussion of the findings.

Postinterview questionnaire responses were merged with demographic data and entered into SPSS 12.0 (SPSS Inc., Chicago, IL) for descriptive analyses. Postinterview questionnaire results were examined to complement the qualitative findings, and are therefore discussed in association with relevant qualitative findings.

Results

Recruitment and participant characteristics

A total of 359 individuals contacted study staff and completed the screening process. Of those, 105 were eligible to participate and 74 (70.5%) completed enrollment. Six interviews of enrolled participants were not retained because of one incomplete recording and five interviews that were found to contain inconsistent and unreliable information. Of the 68 participants whose interviews were retained, 63 (92.6%) received their HIV diagnosis since the year 2000 and were included in the present analyses.

As illustrated in Table 2, most (84%) participants were diagnosed in the 12 months prior to the interview. Mean participant age was 39 years and the sample was predominantly white (44.4%). Participants reported a mean of 17 hours (range = 0 to 60 hours) of Internet use in the last 7 days. Of the 8 participants who reported 0 hours of Internet use in the last 7 days, 4 used the Internet within the last month and 2 more had used the Internet in the last year. Although the majority of participants (55.6%, n = 35) were recruited to the study via the Internet, 19.1% (n = 12) were recruited through HIV medical clinics. The remaining participants were recruited through other mechanisms (e.g., word-of-mouth referrals from other participants or members of the study's community advisory board). The mean length of interview was 53.7 minutes (standard deviation [SD] = 15.6).

Table 2.

Characteristics of Persons Recently Diagnosed with HIV by Recruitment Group (n = 63)

Total	Total n (%) 63	GBM n (%) 21	HM n (%) 16	HW n (%) 20	TGW n (%) 6
Age (years), M (SD)	39.0 (9.2)	34.3 (6.9)	42.6 (8.8)	40.1 (10.7)	42.3 (6.3)
Race/ethnicity
Latino	11 (17.5)	5 (23.8)	2 (12.5)	3 (15.0)	1 (16.7)
African American	19 (30.2)	3 (14.3)	4 (25.0)	9 (45.0)	3 (50.0)
White	28 (44.4)	12 (57.1)	8 (50.0)	7 (35.0)	1 (16.7)
Other^a	5 (7.9)	1 (4.8)	2 (12.5)	1 (5.0)	1 (16.7)
Education
Grade 12 or less or GED	24 (38.1)	0 (0.0)	8 (50.0)	11 (55.0)	5 (83.3)
Some college/AA/Tech degree	18 (28.6)	9 (42.9)	4 (25.0)	4 (20.0)	1 (16.7)
College degree and above	21 (33.3)	12 (57.1)	4 (25.0)	5 (25.0)	0 (0.0)
Length of HIV diagnosis
≤ 12 months	53 (84.1)	21 (100.0)	9 (56.3)	20 (100.0)	3 (50.0)
13–36 months	3 (4.8)	0	2 (12.5)	0	1 (16.7)
37–60 months	3 (4.8)	0	2 (12.5)	0	1 (16.7)
61–96 months	4 (6.3)	0	3 (18.7)	0	1 (16.7)

Other self-reported race/ethnicity categories included Asian, Native American/Alaskan Native, Native Hawaiian or other Pacific Islander, and more than one race.

GBM, gay or bisexual men; HM, heterosexual men; HW, heterosexual women; TGW, male-to-female transgender women.

Interview themes and usefulness ratings of HIV-related information topics

Four overarching themes related to participants' postdiagnosis experiences with HIV information-seeking on the Internet were identified through the qualitative interviews: usability, accessibility, inclusivity, and trustworthiness. Mean usefulness ratings of 46 HIV-related information topics, and how each topic ranked overall, are presented in Table 1. These and other postinterview questionnaire results are discussed in association with related qualitative findings below.

Usability

The “Usability” theme included references to the specific topics that participants were using HIV-related sites for and the extent to which sites addressed those immediate postdiagnosis needs and concerns. Participants discussed looking for information and resources to address very specific needs following their HIV diagnosis, including answers to basic questions about HIV. The needs were various, often specific to their personal situation or background, and frequently urgent. Sites that provided access to practical information related to a wide range of postdiagnosis needs were highly valued for their usability, whereas the inability to find these resources often led to frustration.

PRDH described initial needs for basic reassurance that HIV was not a “death sentence,” information on treatment and support resources in their local area, and medical information on how HIV enters the body and affects the immune system. The ability of online resources to address their immediate postdiagnosis needs for basic and practical information was paramount. PRDH wanted information that was targeted to the newly diagnosed. Several expressed surprise at how little they knew about HIV before they received their diagnosis. The first concern many PRDH had upon receiving the diagnosis was to address fundamental questions about the virus itself:

I got on the Internet and tried to find out a little bit more about it and I didn't know anything. I literally didn't know, I know it sounds dumb, but I didn't know a female could give it to a male even. I never thought of it in that context before. [46-year-old, white heterosexual man]

Yeah, basically I guess I wanted to know what HIV-1 was, I had no idea what that was. And I had no idea what strands are and how to differentiate strands, what are the strands? I still don't know that … . I guess the next thing I was really concerned about was how did HIV turn to AIDS … I wish I could have found that, more of it on the Internet. Because I did go on the Internet. [42-year-old, white heterosexual woman]

Seeking information on HIV treatment options, including interpretation of laboratory results (e.g., CD4 and viral load), available HIV medications, medication side effects, guidelines for starting medications, and drug interactions, was reported. Indeed, when specifically asked about the usefulness of various topics in the post-interview questionnaire, medical treatment-related topics scored among the highest (Table 1). In terms of importance, communication with medical experts (M = 9.6, SD = 0.9) and HIV/STD experts were highly rated (M = 8.8, SD = 1.9). This was exemplified by the following quote:

The very beginning ones were strictly medical … what's it going to do to your body? What kind of precautions do you have to take to keep from getting opportunistic infections? What does your actual numbers mean? What does viral load mean? What does your CD4 count mean? [46-year-old, white heterosexual man]

Nearly one third of the participants discussed concerns related to the adequacy of HIV transmission-related information available online. Although many noted such information was available, they felt it was insufficient in some of its details or in how to have safe sex from the perspective of someone living with HIV.

Well, I haven't been able to find a bunch of resources or information on a couple that one's positive and one's not. I haven't found a lot of that and if I have it's usually where the man is positive and the woman is not. And not the other way around because I'm positive but my partner is not. So I can't find a bunch of information on that. [47-year-old, heterosexual Latina]

Another one is different ways of having safer sex. The safest sex you can have you know is no sex at all. But we're all human. There's other ways of having, you can please yourself just as intimate as you could in your old habits as you can finding a new sexual habit. A different way [of] going about having sex. [47-year-old, black transgender woman]

A number of participants expressed interest in alternative health approaches and other health maintenance topics that would extend the length of time living without taking HIV medications. Such topics included general diet and nutrition, vitamins and herbs, exercise, and sleep needs.

I think I'm still looking for that. Somebody to say this is a good diet, or this is something you should be doing, or this would really help you … or you should definitely stay away from that. There's really not a lot of that out there. I just think that would be really helpful because you see so many people or so many sites for like cancer and what would be good for them or what they should or shouldn't do or how to help them get through chemotherapy. But there's nothing that tells you what the side effects are of the antiretroviral drugs or what you can do to try to stay off them for as long as possible. [32-year-old, white heterosexual woman]

Practical issues that participants discussed included legal issues, especially information dealing with discrimination in employment or housing, financial issues, laws and other policies affecting their access to health insurance and coverage for HIV medications, and other issues such as life insurance and estate planning. Among these concerns, issues regarding health insurance were predominant:

You know what, a really big category that we have, that I have completely missed is information on insurance. It's huge, really, really huge. COBRA, all that stuff, that is actually lacking from the websites I've been to, big time … . I realize it's a very complicated topic, but if someone could be an expert on that and can answer specific questions that would be very helpful. [30-year-old, white GBM]

Finding local resources through the Internet was also widely viewed as being of critical importance. PRDH described how they had used the Internet to find their current medical providers, mental health resources, and other services available through AIDS service organizations. Some searched for local resources but had difficulty finding them through the Internet.

I guess some of the programs that's available for people with HIV and definitely some numbers that people can call because when I was first diagnosed, I didn't know who to call, I didn't know where to go. And once I found those phone numbers on the Internet, I mean that gave me a lot of information. [42–year-old, white heterosexual woman]

I haven't found one for the emotional needs, but that's kind of hard because that's something that you need to be able to find someone that you can really sit down with and talk with. But that's something that needs to be listed on the website, is where you can go for the emotional or mental. [38–year-old, white heterosexual man]

Above all, PRDH were looking for reassurance that an HIV diagnosis did not mean that they were facing imminent death. Participants indicating this need discussed looking for positive views, or staying away from websites that were negative or “all gloom and doom.” Many were quite explicit about this immediate post-diagnosis concern, as illustrated by the following quotes:

I think the most important thing is to convey the message now that HIV is not a death sentence. HIV is not necessarily AIDS … You can be HIV-positive and never actually have AIDS. I think people need to understand that. [43-year-old, black GBM]

What I found helpful was there was some people and they have their histories online. There was people that had been diagnosed for 10 years, 30 years ago, something like that. So I learned that I wasn't going to die next week or something because that's what I thought at first. [32-year-old, transgender Latina]

Accessibility

In contrast to the Usability theme, comments pertaining to Accessibility focused on the process of using the websites rather than their specific content. The “Accessibility” theme encompassed the extent to which features of the websites enabled or hindered participants in finding what they were looking for online. These features were sometimes described in terms of elements that either attracted them to the site or that they wished to avoid in the future. Elements of this theme included references to features that made the site easier to use or more appealing, such as navigational tools they used within or between sites to locate information, ways in which the site organized information or grouped topics, interactive features, and features that augmented the visual appeal of a site.

The Internet was accessed by PRDH who were clearly familiar with and comfortable conducting online searches as well as by those who had less personal access to the Web. Nearly all participants reported that the Internet was a critical access point for HIV-specific information and other community, social, legal, and financial resources relevant to HIV. Those PRDH with less access to or comfort with computers drew from their social networks, including formal and informal care providers, to find or discuss information that was obtained through the Internet. The following two quotes illustrate this contrast:

I was really, really proactive … I immediately ran to the Internet. And I know the basics of HIV but I don't know everything that you needed to know about it … So immediately I, upon getting my preliminary results, I immediately ran to the Internet and looked up everything.” [31-year-old, white GBM]

My sister has just been the greatest kid. She will go on the Internet with me and find out a whole lot of stuff that I am not able to manage. Case manager. He pulls it up on the computer, I read it, we go back on it and we discuss it. That's how I found my doctor. [48-year-old, black heterosexual woman]

There was a sense of push and pull in how PRDH described their interactions with HIV-related websites. Features of websites that pulled, attracted, or drew people back to the site included the ability to sign up for email-based newsletters from HIV-related websites. Many PRDH indicated that they preferred to be sent information in this manner because it enabled them to sort through the topics or news that was of interest to them, making relevant information highly accessible. If they had to seek information online, websites providing information in simple language and that summarized information were also described as attractive and more accessible. Websites that provided an “Ask the Experts” feature, in which one could review previously posted questions and answers provided by a medical expert, were also widely described as an appealing resource that PRDH returned to as new questions arose.

In contrast, the following quote illustrates how features of a website that are perceived as inaccessible can push PRDH away from potentially helpful material:

It should be fairly easy to navigate … because if people are stressed, especially an HIV website, if people go to a website and it's new and it's too hard to navigate, they're just going to turn it right off.” [55-year-old, white heterosexual woman]

Sometimes even on [website], even other websites that are really exhaustive to read it and you can look at the article and it might be two pages long, and sometimes it stops me from reading it because I just want that summation basically, I just want an idea of what it is that they are trying to say, not necessarily all the information. [33-year-old, white GBM]

Ease of use was a prominent component of Accessibility. Concerns related to ease of use often emerged in the context of the terminology and unfamiliar jargon used on some sites, as well as in the difficulty of maneuvering within some sites to find specific topics of interest. PRDH expressed frustration with the medical jargon and information overload that they often encountered on HIV-related websites:

The article has to be written in a way that most people can understand it. Because a lot of the articles when I started reading these articles I didn't understand 90% of it. So I had to go and do different research and write down things and find out what they meant. Because they were really like kind of for professionals … for example, hepatology, liver problems, the study of the liver. But instead of say hepatology, write liver. So people don't spend 10 minutes to what hepatology means.” [52-year-old, heterosexual Latino]

The way that they are organized and the layout of them, there is so much stuff going on. Because I think they are more designed for people who have been positive for a long time and they know how to navigate to the specific information that they are looking for at that point. But if you're newly diagnosed, there's so many things coming at you at once. If there was a way to clarify, like for newly diagnosed, way more simplistic in the presentation of the information would be by far helpful.” [26-year-old, white GBM]

Ease of use was also highlighted in the discussion of personalized web-based tools for health management. Several participants indicated that one tool they found especially helpful online was a self-management program to help keep track of viral load and CD4 levels. Participants who were unaware of the existence of such tools also indicated interest in having something to help manage and track medical and other health-related data. As one participant noted:

There was one website and I don't remember the name, but you can plug in your bloodwork from month to month to month and you can see your upward trends or downward trends … trends are better than just one bad month of readings because your body fluctuates so much every day.’ [28-year-old, white heterosexual man]

Many PRDH offered suggestions for how to improve the layout of information on HIV-related websites. Typically, simplicity was highlighted. As one noted:

I think it needs to go from simple to complex. People find out in all different ways I'm supposing. Maybe just a general overview and then some different links to women and HIV, dating and HIV, transmission, explaining CD4 and viral load, a thing on meds, and a thing on taking care of yourself, longevity, this that and the other.” [57-year-old, white heterosexual woman]

Graphics were also noted as helpful in supplementing text-based information, as long as they were presented simply:

For example, someone who recently forwarded me a PowerPoint of how AIDS drugs, or how HIV drugs work and it had a very good graphic component and I thought that was actually pretty much the first time I had understood it. [30-year-old, white GBM]

A number of PRDH also discussed “links” as an organizing tool. Many liked selecting a hyperlink to find more in-depth information on a topic, or as a means of identifying where information on other topics could be found:

It's all about the intuitive links or the click here that comes at the end of the paragraph where or just having the word highlighted that you can go back and say, ok, a mutation. Go back and hit that and it will take you to the link. I think that's interconnectivity between the pages and the other sites that's one of the most important [features]. [40-year-old, white GBM]

Several participants expressed a desire for greater access to website contact information, such as a toll-free number or contact information for the website owners themselves:

A lot of them didn't have contact information where you can contact them over the phone. And I'm not that great with the computer, so it would have been easier if they had the number or address that I could write to. [40-year-old, black heterosexual woman]

Inclusivity

The theme of Inclusivity consisted of references to the importance of social connections and the types of social connections PRDH sought online. It also encompassed references to the types of audiences PRDH wanted to be targeted by HIV-related websites or whose perspectives they valued accessing online. Some participants described how they had benefited from finding these interpersonal connections or learning from others' perspectives, whereas other participants identified shortcomings in the diversity of perspectives that HIV-related websites presented.

PRDH frequently sought connections to other HIV-positive persons. Consistent with this finding from the qualitative data, meeting other HIV-positive persons was rated highly on importance (M = 8.8, SD = 1.9) in the post-interview questionnaire. Meeting potential dates or sex partners, on the other hand, was rated relatively lower and displayed a wider range of responses (M = 6.6, SD = 3.4).

PRDH described a great deal of strategies for meeting other HIV-positive persons online or learning from others' “survival stories.” They found these stories through reading blogs, listening to podcasts, viewing message boards and personal ads. What they were looking for from other HIV-positive persons were role models, friends, and opportunities for mutual support. Many of the participants specifically spoke of wanting to hear how others living with HIV coped with the virus, how they dealt with medications and side effects, and how they discussed HIV with their friends, families, and partners.

For a lot of HIV people we are a huge support group for each other on there and it has been a godsend to a lot of us. When new people get on there, they'll put “I'm scared and lonely.” You should see the response from all across the U.S.” [33-year-old white GBM]

In addition to more broad-based searches for others' stories or support, several participants reported looking for more of a one-to-one match with a person who had been living with HIV for a longer time. As one stated:

I think a way to match up people that are experienced [would be helpful]. When I say that it's someone who's been diagnosed for 10, 15, 20 years and is still going strong. A way to match up those kinds of people with newly diagnosed people, if they so wish. So like there's a mentorship, like a mentor partnership thing.” [27-year-old, white GBM]

However, others preferred using the Internet primarily to identify non-Internet ways to connect with other HIV-positive persons, such as in their local area or by phone:

It don't got to be on the Internet because some people don't feel comfortable on the Internet … Just have a hotline that you can talk to another person that has been positive and you all can share each other's story. [43 year old, black heterosexual woman]

Several participants spoke of loneliness and that what they sought was companionship, support, and emotional connection more than sexual relationships.

For instance:

And right now I'm at that point because it was a sexually transmitted disease, I'm not even feeling all that sexual. It's just someone I can talk to. I'm kinda not even in that mode now. Maybe I've done enough of that. Maybe I need to take it to another level. Just companionship and someone who can relate. [43-year-old, black GBM]

I wasn't sure what there would be and I figured there would be some type of big group therapies or something. I would have liked to be able to reach out to more HIV-positive people locally. Not just for dating and stuff, but for friends and everything. [29-year-old, white heterosexual man]

Others expressed interest in dating, but challenges with rejection and the HIV disclosure process:

It's hard to actually go out and try to find someone and get rejected after you tell them you have this. I feel that it's more easier to go onto the chat lines on the computer and get to know somebody off from there. Then it's still kinda hard because you have to eventually tell them … about the whole HIV. So it's like it's easy but it's hard at the same time. [23-year-old, heterosexual woman of more than one race]

Some expressed desire for more opportunities for social connection on the main HIV-related websites such as through locating books written by HIV-positive persons, celebrity activities related to HIV, and weekend retreats or travel opportunities for HIV-positive groups.

Some getaway places to where they have more retreats. I just found that they have … every Sunday they have several males, co-eds, camping, retreats. Maybe go somewhere and do some bungee jumping. That's the one that comes to mind.I mean my mind is that way because I am new at this.” [47-year-old, black TGW]

Several noted a need for more information and resources specifically geared toward HIV-positive heterosexuals and transgender persons. Most of the comments on this issue were made by heterosexual women, but this concern was articulated by others. For instance:

This becomes limited for me because I'm transgender. So the person I'm talking to may know about this particular subject, but I'm viewing it differently as transgender. They can't relate. So it would really have to be into connecting with people that can relate in the same sense that you are. I would have in the website transgender with HIV. It is big up here and all over and it wouldn't be too hard for somebody to relate to what I'm saying because it's also involving also being transgender. [48-year-old, transgender woman of more than one race]

Other groups that were noted as receiving insufficient attention online included African Americans, Native Americans, and older persons. In the postinterview questionnaire, more PRDH (46.0%, n = 29) indicated that they would prefer a website that contained both general HIV information and information specific to persons like themselves than just general or just group-specific information. As one woman put it put it:

I would just say honest information [is needed], not just gay oriented. So much is gay oriented. And I love the boys, but they better make room for me too … we're here too, and we're growing. [31-year-old, white heterosexual woman]

Trustworthiness

The theme of “Trustworthiness” included references to websites that were highly trusted and elements of websites that fostered distrust. For instance, many PRDH described the process and their feelings toward finding a website that became their primary source of HIV-related information and support. A sense of distrust was described in terms of how much information about themselves they felt comfortable revealing on websites, negative experiences with other website users that fostered distrust, and references to reasons why they might distrust the content of certain websites.

Many described a process of reviewing a large number of websites, especially when they were first diagnosed, and experiencing difficulty with knowing which websites had trustworthy information. Often, a favorite website or two would emerge through this process that, once found, they would return to repeatedly. Many PRDH in the interviews described a strong preference, even loyalty, to a single website. For instance:

I researched myself to death online. I have my trusted websites, like [3 sites named]. [28-year-old, white heterosexual man]

Once you get one that you find, once I got used to [site named] popping up and I said, well, go look at this website. And then you realize that was just a mountain of great information. And that's when I just stayed with that one. [55-year-old, white heterosexual woman]

On the other hand, a few expressed concerns about their privacy on websites, or of their personal information being misused by others. Many noted that information online could be misleading, biased, or out-of-date. Some took note in particular that sites associated with pharmaceutical companies could be unrealistically optimistic about living with HIV. An example of how the perception that Web-based content is biased or misleading could be troubling for some PRDH was provided in the following quote:

I think oftentimes you see these ads for all these HIV meds … and they always have a model that is beautiful. That's not always the reality of HIV. Yes, there is sometimes and there are some gorgeous people who are HIV-positive, but you don't want to just have beautiful people you want to be as real as you can. Real people who are really in this situation need to be on there. [31-year-old, white GBM]

Bias was also perceived as taking on several other forms, including outdated information, or, in some instances, of a dangerous denial of the very existence of HIV/AIDS:

… I think that I trust it as a good source of data in terms of, I think a lot of the websites out there maybe have old information or biased or maybe are sponsored by a drug company so you don't know if you can trust what they're saying. So I would say I have to trust that the site has good, current data that is unbiased. [24-year-old, white GBM]

Some of them are like, oh you know AIDS doesn't exist and you're old and you're going to die. Some of them just have really bad information. So you've got to be really selective about what you looked at. [55-year-old, white heterosexual woman]

Discussion

The present study explored how PRDH used the Internet to meet their practical, social, and emotional needs after receiving an HIV diagnosis, which topics were most important to them, gaps in existing online HIV-related information, and which website features they found helpful or unhelpful. PRDH discussed a variety of ways that HIV-related websites addressed their most urgent and immediate concerns (i.e., usability). These included the need to make interpersonal connections with other PLWHA, whether for friendship, mentoring, or more intimate relationships. Although extensive research has examined how using the Internet to meet sex partners has been associated with increased risk behavior, particularly among MSM,^12

–15 there appears to be an ongoing need for Internet-delivered programs and services to foster the development of healthy and mutually supportive relationships among PLWHA. This may be particularly important for those who have been recently diagnosed with HIV.

In addition to seeking information on various practical topics and opportunities for interpersonal interaction, we found that PRDH were interested in accessing HIV prevention information online. Interactive safer sex websites may not necessarily cater to specific concerns and perspectives of HIV-positive persons.³⁵ PRDH may be at a highly infectious stage of illness (e.g., those in the primary HIV infection stage), and although many report a reduction of sexual activity post-diagnosis, some continue to engage in behaviors that may put their partners at risk for infection.³⁶ More efforts to provide Internet-based HIV prevention and transmission information that is framed from the perspective of persons living with HIV, and particularly newly diagnosed persons, are needed.

The ability to access clearly presented information on easily navigable platforms was also a critical theme in the interviews. PRDH sought information in formats that were easily searchable, sorted, and summarized. More research is needed to understand how HIV-related internet sites are developed and the extent to which input from PLWHA is used to inform site content and format.

Credibility and the trustworthiness of websites was another concern for many PRDH. Elements that can increase perceived website credibility include providing references for information sources, identifying a physical address of the website owner, providing background information on the expertise of website owners, and indications of how recently the content has been reviewed or updated.³⁴ A recent review of HIV-related websites found that the majority continue to lack many of these indicators of credibility.¹⁷ The present study suggests that providing more indicators of credibility may attract and retain a more loyal base of users to HIV-related websites.

Despite the lack of literature on the post-diagnosis needs of HIV-positive heterosexual men and TGW, there were few areas in the present analysis in which groups differed. The main exception was in the perception of some that current HIV-related websites tend to cater more to the gay community than to other communities affected by HIV. A recent review of HIV-related websites found few websites that targeted information to specific gender/sexual identity groups.¹⁷ Most PRDH wanted to use HIV-related websites that provided both general information and information specific to “people like me.” Because some TGW may identify more as women than as transgender, and do not necessarily feel included in gay-oriented venues when seeking health-related information,³⁷ more formative work should be done to address the specific needs of this subpopulation as well.

Several PRDH reported either already using or interest in using online self-monitoring tools. In a pilot study, Gomez et al.³⁸ found that such tools may be feasible to use and acceptable among HIV-positive persons. HIV-related health monitoring is just one aspect of a holistic set of needs HIV-positive persons may obtain support for online. Some HIV-positive persons may also benefit from self-monitoring of other health-related behaviors, such as risky sexual or substance use behaviors. The extent to which these holistic self-management needs can be integrated should be explored in future research.

We discovered that, despite limited access to the Internet reported by some of our participants, all PRDH interviewed reported alternative ways of obtaining and making use of Internet-obtained HIV information. The “digital divide” has been discussed as a concern for many underserved populations, and particularly as a barrier for HIV-positive persons.³⁹ The landscape continues to change quickly in this regard, however, and HIV-positive persons without direct access to the Internet may obtain information and other resources indirectly, such as through lay (e.g., friends, family members) and formal (e.g., social workers) caregivers.²⁶ More research is needed to enhance our understanding of how PRDH involve their caregivers in their use of HIV-related websites.

Our results must be interpreted with caution, given a number of potential sources of bias. The participants were self-selected, recruited primarily through web-based and clinic-based venues. The extent to which various differences in perspectives may have been associated with recruitment venue could not be examined due to insufficient sample sizes. The study did not examine what proportion of PRDH use the Internet or how additional PRDH might be guided toward the Internet as a resource. There may also have been biases in recall, particularly among the heterosexual men and TGW who were diagnosed more than 12 months prior to the study interview. The difficulty in recruiting HIV-positive TGW, in particular, may have led to underrepresentation of their perspectives in this analysis.

Nevertheless, the multimethod approach used in this study to gather information about how PRDH use the Internet provided rich and mutually enhancing sources of information that would not have been possible in quantitative or qualitative methods alone. For example, themes emerging from the qualitative interviews uncovered a number of needs that were not identified in the quantitative post-interview questionnaire, including health insurance and mental health resources. PRDH expressed the need for more information on how their health insurance would be affected by their HIV diagnosis. They also wanted mental health counselors to be available either online or more easily accessed through HIV-related websites. Although it was unsurprising that such topics were important issues for PRDH, the fact that they were not included in our original set of questionnaire items underscores how research findings can be enhanced when qualitative and quantitative data collection methods are combined.

Some additional insights from these findings suggest that online services for HIV-positive persons should organize topics of information in a way that maximizes the ability to access relevant resources simply and quickly, and according to factors such as HIV status, the stage of illness, and whether persons are seeking information for themselves or someone else. Indicators of credibility are an essential element for building the trust that HIV-positive persons develop for those sites they return to repeatedly for support, information, and to answer questions as they arise. Input from HIV-positive persons should continually be used to inform the design and content of HIV-related websites. Within a broader context of providing information and support services to PRDH, HIV prevention information and tools can be delivered in a way that enhances persons' ability to address their own health while meeting other important holistic needs.

Footnotes

Acknowledgment

This study was funded by the CDC Cooperative agreement #5UR6PS000341. The findings and conclusions in this report are those of the authors and do not necessarily reflect the views of the CDC.

Author Disclosure Statement

No competing financial interests exist.

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