Meeting health information needs of people with HIV/AIDS: sources and means of collaboration

Authors


Laura O’Grady, Faculty of Information Studies, 140 St George St., University of Toronto, Toronto, Ontario, Canada M5S 3G6. E-mail: laura.ogrady@utoronto.ca

Abstract

Background:  Internet-based applications, in particular those that allow communication, have great potential to meet information needs. Limited research has indicated that people with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS; PHAs) use these technologies, but it has not yet been examined how resources are used collaboratively and in conjunction with offline sources.

Objectives:  The purpose of this study was to determine in what ways PHAs collaborate to meet treatment information needs and what role Internet-based computer-mediated communication (CMC) played in meeting this goal.

Methods:  This exploratory study was implemented using surveys and focus groups with 23 participants in Toronto, Canada. The purposive sample included men and women.

Results:  A variety of both off- and online resources were used to learn about HIV/AIDS treatment information, including web-based and print. All participants were communicating with others, primarily in person, and most desired anecdotal treatment information. However, few reported using CMC to accomplish this goal. Harris and Dewdney's Principles of Information Seeking was used to frame the findings.

Conclusions:  Despite technical proficiency with CMC, few participants in this study reported use of this communication tool. Information professionals need to ensure access to HIV health information including those in remote areas who have fewer resources.

Introduction

Use of Internet technologies, in particular websites, as a means of distributing health care information is increasing in popularity. More of the general public (consumers) are using this medium for health care information. One population that uses the Web to find health care information is that of people with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS). AIDS is a complex disease and requires extensive informational support to maintain the health of those infected with HIV.1 In addition to coping with this very serious illness, those with HIV/AIDS can feel stigmatized.2 Treatment information resources are vital for those involved with the disease and web-based resources would seemingly provide an optimal environment to find and learn in a confidential manner. As knowledge about treating HIV/AIDS has expanded, people with HIV/AIDS (PHAs) must deal with a vast array of treatment options, combinations of medications and choices about drug holidays. Internet use amongst PHAs may have a positive impact on health. One study on this technology's use amongst PHAs reported that, ‘These preliminary findings suggest an association between using the Internet for health-related information and health benefits among people living with HIV/AIDS.’3 p.111

Along with reliance on web-based environments, PHAs access other resources to augment their learning about self-care and treatment issues. Activities may include seeking out content from local patient advocacy groups known as AIDS Service Organizations (ASOs). Some PHAs may also choose to communicate with others who are knowledgeable about the topic. Content analysis of open-ended survey questions described these sources as including medical professionals, staff at ASOs and peers.4 The core concept of all these information-seeking efforts is the desire to learn about the disease, which can be difficult and time-consuming, especially with an HIV/AIDS-related content. Little is yet understood about the ways in which PHAs are using these various resources to educate themselves about treatment issues. One preliminary investigation demonstrated that PHAs indicated resistance to using online environments as information sources to support learning about treatments.5

Literature review

Meeting information needs using traditional resources

A small number of studies are available on how treatment information needs are met amongst PHAs. Early research published when no viable treatments for HIV were available concentrated more on transmission prevention. One investigation designed to measure HIV-positive participants’ beliefs and behaviours regarding HIV infection also inquired about information needs. The results indicated that the majority (90%) of respondents wanted information on ways to boost their immune system.6 Subsequent research on coping strategies reported that people living with HIV tended to seek information from peers who were healthy and maintained a positive attitude about their circumstances.7 These studies used only male research participants and were published before widespread access to the Internet was available. Another more recent publication with women reported education as a self-care strategy but no reference to web-based resources was made.8

Meeting information needs using online resources

Some research specifically involving online HIV/AIDS support groups has been conducted. One project, the Comprehensive Health Enhancement Support System (CHESS), was created to provide information, support and decision-making tools for a variety of health issues, including HIV/AIDS. Unlike an Internet website, CHESS was a Bulletin Board System (BBS) consisting of a self-contained environment accessible only by direct modem connection. Results of research with the HIV/AIDS module indicated that this type of discussion group was a frequently used component.1 Although this study was not conducted using web-based interfaces, it did demonstrate that use of computer-mediated communication (the online discussion area) was popular. However, this research was published in 1995 and since then much has changed, including technology and treatment options.

Objective

In order to effectively provide HIV/AIDS information and support its learning, it is important to understand how this content is sought and used. The objective in this study was to determine in what ways people with HIV/AIDS are collaborating to meet their treatment information needs and what role Internet-based computer-mediated communication (CMC) played in meeting this goal.

Methods

The research investigation reported herein was developed based on results from a preliminary study that investigated PHAs use of an online learning environment.5 It is worth noting that, despite expertise in this area, CMC was only used sporadically for HIV/AIDS information. Less use of the Internet to support information needs was also reported. Complete details of this study are published elsewhere.5

To explore further these findings, the research was redesigned eliminating the learning module. A qualitative approach using focus groups was chosen, as the investigation was exploratory in nature. Focus groups provide a mechanism to correct any misunderstandings regarding the questions, and to use follow-up questions, if necessary.9

A purposive sampling procedure seeking those with an interest in HIV/AIDS treatment information was used to recruit appropriate participants.10 To address the research question, the inclusion criteria required that participants have a need for treatment information related to HIV/AIDS, have access to the Internet and participate in a focus group conducted in Toronto, Canada.

Potential participants were recruited via posters placed on bulletin boards in AIDS Service Organizations, community-based service providers serving those with HIV/AIDS and a community newspaper in Toronto, Canada. Screening surveys matched participants in the focus groups based on gender.11 Twelve men (six in two separate focus groups) and 11 women, five in one focus group and six in another, participated in the study. The focus groups were conducted by the study's author, who has graduate-level training in social science research and is experienced in conducting quantitative and qualitative research studies.

All participants signed an informed consent. Also required was completion of a survey about technology skills and use of HIV/AIDS treatment resources. Each focus group lasted approximately 2 h. The research protocol for this study was approved by the University of Toronto HIV/AIDS Research Ethics Board. Focus groups were conducted until theoretical saturation occurred.12

Analysis

The focus group meetings were audiotaped and transcribed. The transcripts were coded and analysed using Nudist (N6) (QSR International, Cambridge, MA, USA). The categories and coding system was checked by another researcher and intercoder reliability was calculated at 92% with kappa of 0.81.13 Categories developed were mutually exclusive, exhaustive and sensitizing.14 Validity was addressed by attempting to reduce any instances of compliance (when a participant answers in a way they feel is desired or expected) or identification (when a participant responds the same way as someone they would like to be associated with). Participants were probed for further clarification in situations in which it was thought that compliance or identification may have occurred. Attempts to reduce internalization (when a disclosure is considered too personal in nature) were implemented when clarification of responses was requested of participants.15 Survey data were tabulated in SPSS (version 10.0; SAS Inc., Chicago, IL, USA).

Results

Demographic information

Slightly more than half (56.5%) of the participants were between the ages of 31–40 years. About half (47.8%) were women and 52.2% were men. Many (47.8%) had completed college or technical school. About one-third (30.4%) graduated from university. Approximately three-quarters (73.9%) had an income of less than $C30 000. Please see Table 1 for a complete listing.

Table 1.  Demographic characteristics of study participants (valid per cent)
CategoryResponses
Gender
 Female47.8% (11)
 Male52.2% (12)
Age
 21–40 years73.9% (17)
 41 years and over26% (6)
Education
 Elementary school 8.7% (2)
 High school13% (3)
 College/techical school47.8% (11)
 University30.4% (7)
Income
 Less than $C30 00073.9% (17)
 $C30 001–60 00026.1% (6)

Theoretical framework analysis

Participants are identified by their gender (M or F), their focus group number (1–4) and their participant number (1–6) when quoted. Quotes were chosen based on their ability to demonstrate the various concepts and themes that were identified in the findings. Harris and Dewdney's ‘Principles of information seeking’ framework was used as a lens to examine the findings.16 Each principle is listed below, followed by material from the findings that illustrates the concept.

Information needs arise from the help-seekers situation

In this study the situation common to all participants was a desire for information related to HIV/AIDS. Many used various sources to meet their information needs. In focus group 1 (men), many participants reported they used four or five main sources of information. These included websites, print materials (magazines), health care professionals, AIDS service organizations and other PHAs. In this context, a health care professional was considered an information source if treatment materials were provided, and a means of collaboration if treatment materials were discussed or debated. Comments from this group included

‘I go online ... there is an American website called “The Body” that has up-to-date information on treatment.’ (M15)

Other participants used more than one source. For example

‘... I read magazines ... but if I need to find out something I will probably search on the Web and ask my doctor ...’ (M11)

Focus group 3 (men) participants used similar sources: print, websites, health care professionals, ASOs and other PHAs. Responses in this group included: ‘my physician’ (M32); ‘my doctor’ (M46); ‘CATIE [Canadian AIDS Treatment Information Exchange], Website, the Internet’ (M33). One participant elaborated on this issue when saying

‘Doctors, and a staff member at PWA [People with AIDS (Foundation)] who offers treatment information.’ (M35)

Focus group 2 (women), participants reported the following sources: physicians, ASOs, print materials, websites, mailing lists and other PHAs. Some specific comments about communicating with other PHAs were also shared. For example,

‘I usually ask other women who have taken that treatment or whatever and how it affected them’. (F22)

‘I'm a people person so I like to interact with people and find out all information and knowledge from other people so I would go to like a doctor or the nurse to find out specific AIDS-related information.’ (F23)

Not all participants in group 2 used all the sources mentioned. Many of focus group 4 (women) participants relied on four sources: websites, health care professional, other PHAs and AIDS Service Organizations. Some may use more than one. For example,

‘Initially ask my doctor ... if she or he refers me to anyone, to any website I do consider reading it ...’. (F42)

A few participants used various sources as a means of checking one against the other. For example, one remarked that she liked to cross-reference her material

‘... I would think it's best to [inaudible], best to consult with both. The Internet and people because different people react differently ...’ (F42)

Another participant provided another example

‘What I do when I get my information is I usually confirm it. Like if I am hearing something for the first time that I haven't heard before and I am a bit suspicious I might wanna ... like if I hear something from CATIE I might want to go to my doctor and say “I just heard this latest update on such and such a treatment, have you heard this? and what ... and like I'm a little suspicious, what do you think?” ’ (F24)

In the survey, about two-thirds (69.5%) identified websites as one source of information. Two others (10.0%) stated that both websites and print were preferred sources because their information was considered up to date. All participants reported that they used an ASO as an information source except one (95.7%). These survey results confirm what was reported in the focus groups.

The decision to seek help or not to seek help is affected by many factors

A variety of themes related to participants seeking information were found in this study, including whether or not the potential information source was credible or how overloaded they felt when attempting to find information.

Credibility.  The notion of credibility in HIV-related content was a prolonged theme in focus group 1. Many reported problems with trusting online sources of information, including CMC, as the author(s) of any such content are often unknown. For example, one participant stated

‘Not in my experience. Because I just ... I can't see it being credible. I really can't. There's too much out there that's just ... like anyone can post a website. Anybody can put like you know little letters behind their name to say that there are such and such anybody can do it....’ (M13)

There were also comments about credibility issues and preferences for printed materials

‘But ... so that why ... my disillusionment about the Web and its credibility. I'd rather use print you know.’ (M32)

Overloaded.  The time-consuming process of gathering information online was described

‘You have to keep moving from one place to another to get all this information, there's this constant movement. So you have to keep busy and really have to keep on top because there is so much information and it changes on a regular basis and it's very quick and there's also the new technology that keeps coming out.’ (M35)

Frustration with online sources was also described

‘I like hands on. I sometimes get overwhelmed with the Internet. So when I get something hands on it is like less choice. It's like I don't have to pick from 10 000. I just pick from what's there.’ (F13)

Other research on Internet information seeking also found that credibility was an issue.17 Although these participants were not seeking health care information specifically, they questioned the authority of sources. Participants in this research also felt overloaded when conducting information searches.17

People tend to seek information that is most accessible

Negative CMC.  Most participants reported on their surveys that they had subscribed and posted to mailing lists, newsgroups or message boards. However, in the focus groups it was discovered that few were actually using these resources for learning about HIV/AIDS treatment information. Some concerns include problems of conflicting information, posted questions that were never answered, an excess of messages that were complaint orientated and user interfaces that were not friendly. In focus group 3 one participant said

‘I've posted to some message boards but nobody responds; people are very shy. Nobody wants to read their names up there.’ (M35)

A participant in this same group added

‘... the ones I have accessed I have not found very user friendly ... the ones I've found got awfully whiny and it wasn't what I needed.’ (M33)

Other research has found that participants seeking general information online have encountered similar difficulties in relation to website interfaces. For example, some had problems using websites that had too many features and contained too much text.17

People tend to first seek help or information from interpersonal sources, especially from people like themselves

Anecdotal information.  Participants in the focus groups shared many examples and comments about the use of anecdotal information. One described his use of an online forum to obtain this information

‘You know I'm taking this medication, what's your experience with this and ... I get as much information as I can’. (M14)

Most comments in relation to anecdotal information referred to in-person discussions. One participant spoke about this issue with the following comment

‘... When you collect the information then you can pick out the similarities ... then you compare to yours. Like recently I didn't know that bed night sweats was a side-effects [sic] until I asked a friend. So I think it's always good to consult other people.’ (F42)

Another participant also shared how he discussed treatment information with others

‘I have about five friends that I would ask questions or if their ... I happen by chance to get them together will all talk ...’ (M14)

The comments regarding the use of such information were almost uniformly positive in nature. Efforts to find information from peers were very deliberate acts, unlike the incidental information acquisition, such as reading or watching television, proposed in other research.18 Detailed HIV/AIDS treatment information is not likely be found serendipitously by either of these mechanisms.

Collaborating with others.

Participants from all four groups shared insights about collaboration in meeting their treatment information needs. Almost all participants used health care professionals, for example

‘I still speak, consult with my doctor’ (F46)

and/or ASO staff to help learn the information. One comment describing this included

‘It's usually the counsellors at ACT or PWA.’ (M34)

Some spoke with other PHAs

‘I go to friends as well ...’ (M14).

Some participants had extensive experience with CMC. Approximately 90% (90.9%) ranked themselves as experts or intermediates when using CMC, whereas 81.8% had subscribed to some form of computer-mediated communication. All reported sources they discussed HIV/AIDS treatment information with. About half (52.2%) chose a combination of other people (‘friends, partner or family members’; ‘staff or volunteers at an ASO’). Others (43.5%) chose more than one in-person source, but also included CMC (‘email, mailing lists, newsgroups or web-based message boards’) as a source. These data were confirmed in the focus groups.

Stigma.  Many participants shared examples of situations in which they felt stigmatized when accessing for HIV information. One participant described issues of stigma when using websites identified as sources of HIV information as follows

‘But a lot of the problems with any time you go to the actual website is the name of the URLs that identify what the site could possibly actually be’. (M15)

Concern was expressed over privacy in relation to stigma

‘I guess once you have been hacked ... you realize the privacy ... I've been hacked three times before.’ (M14)

When asked if the Internet helped him avoid stigma, one participant replied ‘Not in my experience ...’ (M13). This theme was also prevalent in other focus groups.

One participant shared some thoughts about stigma and HIV information

‘... I want my mailing list and then I want to go on my computer ... to use ... to figure out some stuff, to say I want you to send it to my address because I don't ... you know ... have to hide myself any more ...’ (F45)

Stigma played a large role when seeking HIV information especially and some are deliberately not using the Internet to find materials on HIV because of fear. Although this may not seem to be a likely issue for those looking for information in general, it is an important aspect of finding health information. For example, issues regarding confidentiality when accessing health information were also found amongst rural residing women.19

Discussion

Many health care information seekers, including those with HIV/AIDS, are using various sources to find and discuss treatment content. The diversity of sources (Internet, in person, written materials) may be an indication that some are lacking. Or it may be because participants are checking one source against another. However, the notion that one could use the Internet to avoid any stigma associated with obtaining HIV information2 was somewhat contradicted in this study. Participants in this study expressed some fears when using the Internet to obtain or discuss treatment information. Reluctance to use online environments to communicate about HIV may be the result of increased knowledge regarding threats to privacy on the Internet.

Few participants used CMC to communicate with others about HIV/AIDS treatment information, which contradicts previously published literature in relation to this illness population.1 Those in the present study considered themselves experts in using CMC and also reported they would use this mechanism for non-HIV-related content. However, most would not rely on this as a source of treatment information. Participants in the previous study may have felt more secure communicating online, using a closed BBS environment.1 The lack of CMC use by participants in this research may have been caused by a general dislike of Internet-based computer-mediated communication, concerns about credibility of online information sources, feeling overwhelmed with the amount of information available online and the stigma associated with accessing information online.

Many participants in this research study expressed difficulties with accessing content on the Internet, in particular that which provided a means to collaborate with others. Issues with the usability of online interfaces for use within a health care context have been previously reported.20 The desire for information from others in a similar situation was a consistent theme in this study. Many expressed the importance of receiving information first-hand from others in the same situation as they were, especially those taking similar medication. Accessing treatment information from others outside the formal medical community has also been reported elsewhere.21

Study limitations

Location

This research study took place in Toronto, Canada where there are many sources providing rich offline and in-person sources for communication. Few in this study may need to primarily rely on the Web to find treatment information or CMC to locate others to discuss it, although this was not reported as a reason for not using the Internet. Those in more remote locations may not have access to these resources or may not feel comfortable approaching them in person in a less populated environment. The findings in this study may have been different if it was conducted in a more rural area.

Internet access

The purpose of the study was to determine in what ways people with HIV/AIDS are collaborating to meet their treatment information needs and what role Internet-based computer-mediated communication (CMC) played in meeting this goal. All participants had access to the Internet. Another investigation could focus on those who are without or choose not to access the Internet in order to understand these perspectives as well.

Recommendations for practice

Librarians with patrons seeking HIV/AIDS information need to be sensitive to the stigma associated with this activity. Providing Internet access to patrons should be with as much privacy as possible. Also instruction on ‘safer surfing’ (ways to avoid being tracked) may help alleviate privacy concerns. Given the overload feelings expressed by participants in this study and others,17 librarians could consider developing information sheets containing HIV/AIDS links to help facilitate easier access to information.

More research should be conducted on ways to ensure credible content is portrayed as such and how medically inappropriate content can be readily identified. Information specialists and other infomediaries need to play an active role in this area. Ensuring trust in online environments is an important part of supporting participation.22 All of these issues are magnified in rural areas in which there are fewer HIV resources such as clinics or AIDS Service Organizations and seeking such information can be more stigmatizing. Health science librarians could also liaise with other health care professionals working in HIV/AIDS to facilitate this process.

Conclusions

In relation to Internet use, the findings in this research indicated that participants used websites for information purposes but generally preferred to communicate with others in person to discuss the material. Possible reasons for this included feeling overloaded and overwhelmed, concerns over credibility of online content, negative feelings about CMC environments and stigma related to collaboration. The first three of these issues were also reported in other research about information seeking in general.17 A need for collaborative learning was demonstrated through the desire for anecdotal information from other PHAs. This need has also been demonstrated with other illness groups.23 Online means of communication may provide an excellent means for sharing information sources and learning about HIV/AIDS treatment issues but, as this study demonstrated, there are issues associated with using this technology. As Pettigrew et al. wrote

‘Although information technologies hold a significant promise for linking individuals with information and one another, they are foreshadowed by the potential for a deeper digital divide between the information rich and the information poor.’17 p.895

Much has been written about the general public using the Internet for health care purposes. Many have described its use,3,24,25 expressed concern over credibility in the content26 and have suggested usability is an issue when accessing content online.20 However, the ultimate purpose, to learn about a health condition, also needs to be focused upon. More research on information seeking and obstacles faced by health consumers therefore needs to be conducted in order to achieve this goal.

Acknowledgements

This research was supported by a Canadian Health Services Research Foundation/Canadian Institutes of Health Research (CHSRF/CIHR) training award. Thanks are extended to Jim Hewitt, Lynn Davie, Clare Brett, Doug McDougall, Rosemary Waterston, Wendy Freeman and Nobuko Fujita (Ontario Institute of Studies in Education of the University of Toronto (OISE/UT). Also thanks to the anonymous participants in this research.

Key Messages

Implications for Policy

  • • Collaborating with others when seeking health information is important to those with an illness.
  • • More research on how to design online environments that will support and inform information seekers is required.
  • • Decision makers promoting e-health applications should be made aware that these technologies might not be well utilized amongst health information seekers.

Implications for Practice

  • • PHAs desire extensive information to live with their illness. Many are involved in seeking information and learning about their illness.
  • • PHAs may feel overloaded, have concerns over credibility of online content, have negative experiences with CMC environments and feel stigmatized when seeking treatment information.
  • • Infomediaries such as medical librarians, nurse practitioners and other related professions can help this process by providing support to information seekers.

Ancillary