AIDS Information Exchange in Rural Communities

HIV/AIDS Information Exchange in Rural Communities: Preliminary Findings from a Three-Province Study

Échange d'information sur leVIHetle sida dans les communautés rurales : résultats préliminaires d'une étude réalisée dans trois provinces

Tiffany Veinot Faculty of Information and Media Studies University of Western Ontario, London, ON tveinot@uwo,ca Roma Harris Faculty of Information & Media Studies University of Western Ontario, London, ON Leslie Bella School of Social Work, Memorial University, St, John's, NL Irving Rootman University of Victoria, Victoria, BC Judith Krajnak Evaluation Consultant Delta, BC

Résumé : Les individus atteints du VIH et du sida (IVS) font face à des défis particuliers lorsqu'ils habitent en milieu rural au Canada, incluant l'invisibilité, les stigmates et les limites dans les services locaux offerts. Cette étude examine la recherche d'information des IVS, ainsi que de leurs amis et famille dans ce contexte rural, à l'aide de trois cadres théoriques portant sur la recherche, l'acquisition connexe et le partage d'information. Abstract: People with HIV/AIDS face particular challenges if they live in rural Canada, including invisibility, stigma, and limited local services. This study examines the information seeking of people with HIV/AIDS and their friends/family in this rural context, using three theoretical frameworks that span information seeking, incidental information acquisition and information sharing.

© Ttie Canadian Journal of Information and Library Science La Revue canadienne des sciences de l'information et de bibliothéconomie 30, no. 314 2006

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CJILS I RCSIB 30, no. 314 2006

Introduction In Canada, there are an estimated 56,000 people living with HIV/AIDS (PHAs), with 2,800-5,100 new HIV infections per year (Health Canada 2005). HIV/AIDS primarily affects men who have sex with men, injection drug users, and, increasingly, women and Aboriginal people (Health Canada). Combination drug therapies have revolutionized HIV/AIDS treatment and reduced AIDS-associated morbidity and mortality (Palella, Delaney, and Moorman 1998; Schanzer 2003). However, drug therapies do not cure HIV and requirements of treatment regimes, drug side-effects and potential co-infections mean that PHAs face increasing complexities in managing the disease (Canadian AIDS Treatment Information Exchange 2003). Despite the extent of the epidemic, HIV/AIDS in rural areas remains largely invisible in Canada, although it has garnered more attention in the United States (Holmes et al. 1997; Wasser, Cwinn, and Fleming 1993; Fitzgerald et al. 2003). Nonetheless, rural health issues are an important concern since evidence shows that the smaller the size of a community, the lower its health status (Sutherns, McPhedran, and Haworth-Brockman 2004). Rural communities also face particular challenges in health care, including geographic isolation, lack of services, lack of anonymity, and a necessity for many residents to travel long distances and incur travel costs in order to secure appropriate health care. In Ontario alone, 142 communities, most of them rural and/or northern, are medically "under-serviced," where many residents do not have access to their own general or family physicians (Ontario Ministry of Health and Long-term Care 2004). Community consultations undertaken as a part of this study suggest that members of rural communities may deny that HIV/AIDS is a local issue and may hold Stereotypie and often erroneous views about the disease. American researchers report high levels of stigma experienced by PHAs in rural areas (Black and Miles 2002; Heckman et al. 2002; Heckman, Somlai, Kalichman et al. 1998; Heckman, Somlai, Peters et al. 1998; Reif, Golin, and Smith 2005; Sowell et al. 1997), with some studies suggesting that this is a problem more significant in rural than in urban areas (Reif, Colin, and Smith; Heckman, Somlai, Peters et al.; Heckman, Somlai, Kalichman et al.). HIV-related stigma has been associated with personal stress for PHAs (Heckman et al.) and heightened fear that others will learn about their HIV status (Heckman, Somlai, Kalichman et al.). In addition, stigmatizing views in rural communities may adversely affect

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parental caregivers of adult PHAs (McGinn 1996; Boyle, Ferrell, and Hodnicki 1999). The corollary of high levels of stigma may be that, in comparison with urban residents, rural PHAs report a significantly lower satisfaction with life, lower perceptions of social support from family members and friends, and higher levels of loneliness (Heckman, Somlai, Kalichman et al.). Access to HIV/AIDS treatment information is essential for PHAs and their caregivers ( Canadian AIDS Treatment Information Exchange 2003; Health Canada 2000; Hogan and Palmer 2005; Huber and Cruz 2000) and is used for health decision-making, providing care, support, and treatment to PHAs and patient education (Canadian AIDS Treatment Information Exchange; Health Canada 2000; Hogan and Palmer; Huber and Cruz; Taylor 2002). Additionally, information about HIV transmission is important in people's decision making about HIV-related risk behaviour (Coleman and Ford 1996; Johnson et al. 2003). Despite its importance, however, access to HIV/AIDS information may be limited in rural areas. In Canada, noteworthy barriers to HIV/AIDS treatment information include lack of access to a health care provider and rural residents' reluctance to use local AIDS Service Organization (ASO) services (Health Canada 2000). The result may be few local routes to HIV/AIDS information (Health Canada 2000) for rural-dwellers. Furthermore, proportionately fewer people who live in rural areas have Internet access at home, and public Internet access sites located in settings such as small public libraries seldom afford the privacy needed to seek sensitive health information. Lack of locally accessible HIV/AIDS information can also affect health care providers. For instance, American studies suggest that rural physicians may lack HIV training or experience ( Heckman, Somlai, Peters et al. 1998; Reif, Golin, and Smith 2005), and physicians from the rural United States complain of challenges in providing care for PHAs, such as low HIV patient loads and a lack of specialty back-up support (Samuels et al. 1995). It seems likely, then, that PHAs and their caregivers in rural areas may have unique needs in seeking and using HIV/AIDS information. In the study reported here, we explore how information related to HIV/AIDS is exchanged in, and affects, rural communities. The longer-term aim of our work is to investigate new approaches to providing useful information in these settings. As part of the larger research program. Rural HIV/AIDS

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Information Networks Study, in this paper we discuss preliminary fmdings related to the research question, how do rural-dwelling PHAs and their friends/family locate HIV/AIDS information?

Theoretical framework Several theoretical frameworks from the discipline of library and information science (LIS) are germane to this study and will be used to examine a range of information behaviours described by study participants, including purposeful information seeking, non-purposeful information acquisition, and information sharing. In order to understand purposefiil information seeking by participants, we will rely on the principles of information seeking described by Harris and Dewdney (1994), particularly that people tend to first seek information from interpersonal sources; that information seekers expect emotional support in the delivery of information; and that when there is a high personal risk associated with seeking information, people will either not seek help or will consult strangers such as those found in institutional sources. In our research we explore the extent to which these principles persist among PHAs and their friends/family in rural areas, particularly given local stigma and invisibility related to HIV/ AIDS, as well as physician shortages and limited local services. Information can also be acquired in a non-purposeful manner, through the passive monitoring of everyday life events in order to orient ourselves to our environments and keep our mental models of the world up to date (Bates 2002; McKenzie 2003; Savolainen 1995; Williamson 1998, 2005). Williamson (1998,2005) argues that these general processes render unconscious information needs conscious, which may then lead to purposeful information seeking. Several scholars have also described processes of gaining information while engaging in daily activities ("incidental information acquisition" [IIA]), such as conversations, pleasure reading, or media exposure (McKenzie; Ross 1999; Williamson 1998, 2005). Williamson's ecological theory of information behaviour (1998) explicitly posits that IIA takes place primarily through intimate personal networks, wider personal networks, and mass media, but rarely takes place through institutional sources such as professionals, other organizations, and libraries. Accordingly, this theory assumes the presence of information sources such as personal networks, media, and institutions surrounding the user (Williamson 2005). However, it is unclear what happens if such sources are absent, inadequate, or inaccurate (conditions Harris and Dewdney


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[1994] described as one of the "barriers" to information seeking). It is therefore unknown how readily PHAs and their friends/family are able to obtain useful information about HIV/AIDS incidentally in their rural communities—environments in which there may be limited awareness and understanding of, as well as stigma about, the disease. We attempt to address this important question in the present study. Finally, we explore HIV/AIDS-related information sharing using the concept of information gatekeeping. Research conducted in minority communities reveals a significant role for gatekeepers who act as community links and filters for information gathering and dissemination (Agada 1999; Jeong 2004; Metoyer-Duran 1993a, 1993b). Of interest are gatekeepers' abilities to bridge social worlds and link others to information through an informal network of information sharing (Metoyer-Duran 1993a, 1993b). Although dynamics of information gatekeeping have been reported in work-related and scholarly environments (Allen 1977; Baldwin and Rice 1997; Kronick 2001; Metoyer-Duran 1993a, 1993b), this concept as used in everyday information seeking generally assumes that such individuals are private citizens who are not acting in a professional role. In the present study, such public/private distinctions may not apply since participants have many overlapping relationships and some are involved in considerable volunteer work related to HIV/AIDS. However, faithful to the gatekeeper concept, the analysis we provide in this report focuses on private citizens as potential information gatekeepers, thus excluding those who share HIV/AIDS information as a part of a role in which they are accredited or regulated by a professional or licensing body.

Methods

This research is being carried out in rural regions of three Canadian provinces: Ontario, Nev^^oundland and Labrador, and British Columbia. In a community-based research (CBR) study, community representatives have been involved in all phases of the research through local community advisory committees. Individual, in-depth, semi-structured interviews have been conducted with PHAs, their friends and family members, health care providers, and service providers. Participants have been recruited through health and social service agencies, as well as through snowball sampling that facilitates mapping of community information networks. Interviews focus on

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people's experiences with HIV/AIDS, how they locate and use HIV/AIDS information, networks for HIV/AIDS information exchange, and how information technology affects exchange of HIV/AIDS information. As a part of the interview, the participant's information network related to HIV/AIDS is elicited according to social network analysis procedures. Interviews have been audio taped and the tapes transcribed. Interview data relevant to the study's research questions are analysed qualitatively and compared to the theoretical frameworks described, using the constant comparison method (Glaser and Strauss 1967). NVivo qualitative data analysis software is used to categorize and code these data.

Results Reported here are the results of a preliminary analysis of interviews with sixteen participants in two rural regions of Ontario, including ten PHAs and six of their friends/family members. Research results are analyzed with respect to the theoretical frameworks described earlier. The value of these theoretical approaches is considered in relation to these emergent data.

Principles of information seeking As predicted by the principles described by Harris and Dewdney (1994), the participants in this study often rely on interpersonal sources for HIV/ AIDS-related information, although many of the PHAs do not look for such information from friends and family members unless these individuals are also HIV-positive or are health care providers. On the other hand, PHAs' friends and family members appear to rely heavily upon their friends/family for information—particularly the PHA in their lives. In some cases where PHAs had chosen to be open about their HIV status in the wider community, family members also sought support and information from wider networks of family and friends, although results suggest that they tend not to do so when the PHA in their lives has not openly disclosed his or her status. Harris and Dewdney also suggest that that when the act of seeking information includes a personal cost or risk of exposure for a person, he or she will either avoid doing so or seek information from strangers such as professional caretakers. Many participants in this study report facing considerable stigma in rural areas, and for this reason many are private


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about their status, such as one PHA who does not want his wider cultural community to know: "I don't want everyone to know it because sometimes they are going to point at me and tell me, 'There is the guy with AIDS,' or maybe they will give me different nicknames for that." Such stigma also affects family members who may limit those with whom they speak about HIV to protect the PHA in their lives: "[We] have to fmd a very secluded spot to talk about it because, heaven forbid, somebody who can't handle the information finds out about it, because what do you do with a person who doesn't ... sometimes it just feels like it's me and her against the world." HIV/AIDS-related stigma appear to affect how PHAs seek help or information in rural areas. For example, one PHA described his conversations with other newly diagnosed PHAs: "I've told them to go to a clinic or to ... call this number ... and they'd say they'd rather not because they're seen there ... They don't want to be identified." Indeed, concern over confidentiality was a frequent theme and, perhaps not surprisingly, several PHAs' preferred interpersonal sources of information are health care or service providers with whom they have a professional relationship and who are bound by codes of professional ethics related to confidentiality. Indeed, all PHAs interviewed described at least one such individual in their support and information networks for managing HIV/AIDS. In addition, some family members of PHAs also relied upon such formal providers, with several seeking information and support from their own family physicians to help them understand the situation of their PHA relative. Unlike what might have been predicted using Harris and Dewdney's principles, preliminary results also suggest that the reliance of PHAs and their friends and family on formal providers is not explained solely by negative factors such as HIV-related stigma and fears of exposure. Importantly, formal providers appear in the information networks of individuals who are public about their status as well as those who are more private. Moreover, in many cases, it is the providers' specialized knowledge and immersion in HIV/AIDS issues that are most valued. In these cases, the provider's knowledge is used to help someone navigate challenging issues—by acting as a direct source of information and as a source of confirmation of information obtained from other sources, such as media or educational events. Harris and Dewdney's framework also assumes a division between peer-kin networks and institutional sources such as professional service providers. However, our preliminary findings suggest that this division fades over

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time for sotne PHAs, as formerly professional relationships become friendships or mix with a PHA's volunteer or professional work. Together, such accounts suggest that a professional/institutional dichotomy may not fully explain PHAs' reliance on providers for information—indeed, it appears that PHAs, in their quests for information and support, may render some professional connections personal. Within the Harris and Dewdney principles, interpersonal sources are described as people. However, the PHAs in our study frequently spoke of organizations such as ASOs and HIV specialist clinics with a warmth and familiarity that might generally be reserved for specific individuals with whom they have a close relationship. As one PÍiA said, "They're very much family, the [HIV clinic]," or another, "She's good that way. They all are down there, I have no issue with anybody in that office," Another PHA described relocating to live near an ASO to access support more readily. Similarly, information produced by ASOs may be trusted because it is based on the identity ofthe producing organization. In these cases, PHAs appear to have interpersonal relationships with an organizational entity as a whole rather than solely with specific individuals at the organization, suggesting that some PHAs develop a personal connection to organizations with an HIV/AIDS mandate. Living with HIV/AIDS can be emotionally demanding for rural-dwelling PHAs and their friends and family members, PHAs often describe fear of an imminent death and may react to physical symptoms with anxiety: "When you get sick, you want to know, 'Oh my God, is this it?'" The family members and friends of PHAs also express concern about their loved ones, and many of their questions about HIV/AIDS are focused on the PHA they care about: "Generally when I'm after him for a question or needing an answer or if I want to find out something, it is for my own peace of mind," Harris and Dewdney argue that information seekers expect emotional support because of strong affective components in the information seeking process. In the present study, PHAs described many emotional implications of receiving information about their health, including fear and feeling overwhelmed after receiving an HIV diagnosis, and emotional upheaval after receiving results from the blood tests that monitor their health. They also described feeling upset when hearing about people who had died from AIDS or seeing PHAs who looked sick. More positively, they also described feeling peaceful or secure when there was good news about treatment options, relaxed when the value of their approach to


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self-care was confirmed, or encouraged when they heard about PHAs who had lived a long time with the disease. Similarly, some family members sought information about treatments as a source of comfort, even if sometimes they found it difficult to understand: "I find that anything ... medically related, I have a hard time wrapping my head around it, but I was glad there was something that might be working." As Harris and Dewdney suggested, emotional support is important in information provision. This significance was evident in the ways in which PHAs and their friends and family members described the features they valued about the people from whom they seek information, including compassion, responsiveness to their concerns, and assistance in navigating service systems. PHAs and their family members also expressed appreciation for information providers who look into issues on their behalf and get back to them if they do not immediately know the answer to a question. Consistent with reports elsewhere (see, for example, Harris and Wathen, 2006), the presence of this support supersedes the actual professional roles of the help providers. In fact, while one might expect medically trained professionals to be key sources of HIV/AIDS information, in this study, many ofthe PHA respondents identified social workers and counsellors as key sources of information. In addition, as Harris and Dewdney suggest, peers are also valued as information sources for their ability to empathize more deeply with other PHAs: "If I can call somebody who knows firsthand what it's like for the doctor to say, 'Oh well, your CD4s dropped from 592 to 365,' they know the impact, they know the emotion, they know how that feels. And that's just one level different ... It's a little bit more connected." The importance of emotional support is also evidenced by the negative reactions of some PHAs who felt ignored or that formal providers disregarded their opinions and needs. For some, such experiences led them to doubt the information they had received. As one PHA reported, "[She said], 'You can't get yourself so stressed, because you can die of stress,' 'You shouldn't have a cat,' 'You can't be near mildew.' Now I'm sure some of those are right, but who knows? But after you have a bad experience with that, you never know."

"It's not just, out there": Incidental acquisition of HIV/AIDS information in rural areas

PHAs and their friends and family have a personal connection to the issue of HIV/AIDS and, as such, have an acute awareness of HIV/AIDS-related

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information in the world around them. As one family member described of her growing awareness upon learning of her relative's HIV status, "I've never had to come in contact with it... Only what you read in the newspapers or heard on the TV ... You know it's one of those things that was probably out there just as prevalent then, but it didn't mean anything to me. And then all the sudden that's all you heard." Another family member described paying close attention whenever anyone talks about HIV/AIDS around her. Similarly, a PHA found that she was able to learn how long people can live with HIV, not by seeking information about it, but by overhearing other PHAs talking about their experiences from the early days of the epidemic and realizing when they must have been diagnosed. Therefore, as would be envisaged by Williamson's ecological theory of information behaviour, PHAs and their family members describe monitoring their worlds, and, in so doing, learning about HIV/AIDS and/or keep their awareness of the disease up to date. Contrary to what might have been expected in view ofWilliamson's model, despite ongoing monitoring, the PHAs and their friends and family described relatively few incidents of fmding useful information about HIV/AIDS incidentally or unexpectedly through such sources as personal networks. This fmding is likely due to what PHAs describe as a pronounced lack of discussion about HIV/AIDS in their communities: "It's rarely talked about. Rarely. Just, you know, living up here I don't... I don't even hardly hear anybody hardly talking about it, even at work, you know. And I work in a ... pretty big place." As one family member observed, it appears that one must know where to look to fmd out about HIV/AIDS: "I don't see where it's readily available ... It's not exactly out there. Ifyou want to know, you have to know where to go to fmd it." When HIV/AIDS is spoken about, some participants thought that they are actually more likely to gain wí/íinformation through their personal networks. One participant described the kind of misinformation she has confronted in her daily life: "that it's not an airborne disease, that it's specifically a sexually transmitted disease ... that you can't get it from sitting on the same toilet seat. You can't get it from eating off the same dishes, um, you would actually have to drink the person's blood, you know, if they had a cut on their hand and you shook their hand, you can't get infected that way ... People say dumb stuff" Another participant described misinformation she encounters in her community: "People will say to me, 'Women don't get HIV,' or, 'Well, only drug addicts get H I V " An HIV-positive couple who have been open about their status also identify


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people's attempts to give them information as mostly unhelpful: "We always have people calling us saying, 'Oh, you should try this one,' and we could have been cured a thousand times already if all these things were true." They also found that some of this misinformation sharing has been motivated by commercial interests: "We've had good intentioned people come up and say, because we're so public, 'Oh I hear you have AIDS.' Usually they are multi-level marketers that are looking to get us into their supplements, or that kind of stuff" One PHA also described being convinced to take a multi-level marketing product by his "crying grandmother," who desperately wanted to extend her grandson's life. Looking back, this PHA explained that the product "never hurt and it always helps, but it never helped as much as they claimed it would." The content and extent of local media coverage related to HIV/AIDS appears to contribute to infrequent IIA for rural-dwellers. Study participants observed that HIV/AIDS has ceased to be a hot topic in the media because many PHAs in Western countries are doing well on treatment. As one PHA said, "I feel like we've got to fight to be remembered." Others note that AIDS appears in local media only at the specific initiative of local ASOs or health units, and at specific times, like World AIDS Day or before local fiindraising events. This greatly reduces the extent to which PHAs and their friends and family are able to acquire information incidentally through the media, with the exception of more frequent media stories that deal with the devastating impact of the HIV/AIDS epidemic internationally. Indeed, some participants noted that the international focus in the media, without a balance of local media coverage, reinforces some people's belief that HIV/AIDS is not a local issue—it remains "out there" in the minds of some. Finally, when HIV/AIDS is in the media, it can be less than helpful simply because participants possess other sources that they consider more reliable, such as one family member with an HIVpositive brother: "Unless it's something I think it's worthwhile listening to, I don't pay attention to it because I know I can get my information from him and he's already researched everything there is to research." It is important to note that the PHAs in our study have described IIA originating most frequently from precisely those sources that Williamson's model would predict to be /east likely, i.e., institutional sources such as professionals and organizations, even though the participants must often travel considerable distances to access these sources. Several PHAs and family members reported that they review pamphlets, posters, and bulletin boards at their regional HIV Clinic, gaining useful health advice and

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current awareness from these sources. PHAs also observe other PHAs in settings such as doctors' offices and ASO events, assessing whether other PHAs look sick, how long they might have had the disease, and how well they take care of themselves. Another PHA who volunteers with a local ASO also regularly monitors resources that are displayed at her local organization and at regional HIV/AIDS-related meetings. In addition, while the study results that gave rise to the ecological theory of information behaviour identified the importance ofjunk mail in the lives of elderly participants (Williamson 1998), only those PHAs who have placed themselves on ASO mailing lists indicated that theyVe gained useful HIV/ AIDS information from mail or e-mail. Information garnered from ASOs via mail can be very helpful. As one respondent noted, "When I sought them out the first time, they started sending me letters and memos, and ... they Ve been really resourceful. I haven't really had to ask them for any information." It is only by interacting with institutional sources that participants actually received HIV/AIDS information incidentally via mail.

"People just seem to want to hear our story": HIV/AIDS information gatekeepers in rural areas Study results suggest that private citizens, often PHAs, act as important information gatekeepers in rural communities in Ontario. For instance, a few individuals were nominated as key members of the HIV/AIDS information networks by several of our study participants. Indeed, among this small sample of sixteen participants, one PHA was a key source of information for ten others. Those who are performing such gatekeeping roles spoke of extensive experiences of HIV-related information sharing with others who ranged from work associates, informal clients, family members, and community acquaintances, to individuals around the world they met on the Internet. These gatekeepers provided information through through volunteer work, extended work-related roles, and in their daily lives. People who act as gatekeepers in study communities appear in other participants' stories as sources of referrals to services such as medical care and income support, as lenders of reading material, as people who provide advice about self-care, and occasionally as contacts with other PHAs in the community. For instance, one PHA described using ginger to calm nausea as a result of a gatekeeper's advice, another PHA accessed a free vitamin program on the basis of a gatekeeper's referral, and several friends and family members noted that an information gatekeeper helps them to


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validate or confirm information that they might pick up from other sources. Some gatekeepers are also active in community education about HIV/ AIDS. In fact, the decision by individual PHAs to disclose their HIV status appears to frequently lead to HIV-related information sharing with others. For PHAs who are very public, this disclosure may include spontaneous teaching moments about HiV in the wider community. As one related, "[I've] had people in the grocery store stop [me] and ask [me] questions ... It could be just something general, 'Can you get HIV from kissing?' ... 'What kind of treatments are out there?' ... so just casual encounters, or they will have heard something on the news and 'Is that true?' and just kind of looking to confirm stuff they might have heard, or ask other questions." Information gatekeepers in our study appear highly motivated to seek information and appear to be heavy users of the Internet, keep large personal libraries, and develop out-of-region contacts more than other participants. They also cross boundaries on behalf of those to whom they provide information by understanding service systems and facilitating others' access to them, as well as by grasping complex treatment terminology and issues and translating it into practical self-care advice, i.e., they act as sources of health literacy for others. As one PHA said of a gatekeeper, "Whatever I ask her, she studies, and she give me all the information that I need. I asked something about the animals, their cholesterol, and she gave me complete information with all the details." Although the information gatekeepers concept describes some information sharing in rural areas, many activities are not captured. For instance, as a result of their close experience with the issue, friends and family members frequently reported feeling more educated about HIV/AIDS than the general population as a result of their close experience with the issue, and as a result, "if questions arise from different people or I hear somebody talking about something, then I'm more educated to answer their questions, I think." These individuals often correct others' misconceptions about safer sex, transmission, and the local prevalence of HIV as they go about their daily lives—without displaying a gatekeeper's purposeful information sharing and boundary spanning. Additionally, PHAs often undertake some education in their informal networks, which can help them receive effective support from people in their lives: "When I get my blood work done I always call my mother and tell her. You know, I keep her up to date, tell her ... That's how I get my support ... I've filled her in on [CD4 counts and viral loads] ... She knows."

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As described previously, another important type of information sharing not included in the gatekeeper concept is done by formal providers in their professional roles. Because all the PHAs we interviewed selected a physician, nurse, or social worker as a key source of HIV/AIDS information, it suggests that the gatekeeping concept needs to be expanded to include them. Such professionals are likely to possess specialized knowledge and professional links, and thus may also act as information gatekeepers for their clients and patients. Consideration of the roles of these individuals, in addition to private citizens, may lead to a more holistic picture of HIV/ AIDS information sharing in the lives of rural-dwellers.

Discussion In this analysis, interview data related to purposeful information acquisition have been analysed using Harris and Dewdney's idea that information seekers first seek information from interpersonal sources. This principle has been identified as relevant to the experience of PHAs in other settings. For instance, it has been reported that PHAs prefer to receive health information from someone with whom they have a personal relationship, particularly their physician (Health Canada 2000; Hogan and Palmer 2005; Huber and Cruz 2000). PHAs also regard their peers as an important source of treatment information (Hogan and Palmer; Taylor 2002). Consistent with these earlier reports, the initial results from the present study suggest that PHAs and their friends and family do indeed rely heavily on interpersonal sources, with friends and family particularly relying on the PHA in their lives for information. Also consistent with Harris and Dewdney's principles, the fear of stigma and discrimination appears to have caused some of the PHAs in our study to avoid seeking information or to rely upon professional sources bound by ethical codes that require confidentiality. Departures from what might have been expected from the Harris and Dewdney model of information seeking include the finding that professionals are often valued as a source of information because of their expertise, both by PHAs who are public about their HIV status and by those who keep their status private. This may be due to the specialized nature of HIV/AIDS information, which requires considerable background knowledge and an ongoing effort to keep up to date. Additionally, it appears that a professional/interpersonal dichotomy does not capture the range of relationships that PHAs have with their professional information sources. In particular, PHAs'


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affectionate relationship with HIV clinics and ASOs emerges as an anomaly warranting further exploration. An area for future investigation is whether the rurality of study communities is related to the overlapping nature of these professional relationships. Insufficient attention to affective issues has been identified as a gap in LIS research (Julien, McKechnie, and Hart 2005). Our preliminary results reinforce the need to attend to the affective dimensions of information seeking, particularly in health issues. Again consistent with Harris and Dewdney's predictions, our preliminary study data corroborate the importance of emotional support in the context of HIV/AIDS information seeking. Our study participants reported many emotional reactions to information relevant to their health, and both PHAs and friends/family described accessing treatment information for comfort. Moreover, the participants' comments demonstrate the high value they place on compassion, responsiveness, and empathy in those from whom they seek information and their negative reactions when they feel ignored or disregarded. Indeed, feeling unsupported by an information provider can lead participants to doubt the information that they receive. This finding is reinforced in other research in which it has been reported that PHAs want emotional and spiritual support when making decisions about the course of their treatment (Health Canada 2000). According to Williamson's ecological theory of information behaviour, people may gain information incidentally through social conversations and from the media, as they monitor their worlds. This method has been described among urban-dwelling PHAs who use informal learning and peer observation to obtain HIV/AIDS treatment information (Taylor 2002). This process, which takes place through extended networks of PHAs, friends, and ASOs, may occur through conversation and word-ofmouth, or by observing the physical appearance of other PHAs (Taylor). Our results suggest that such a general ecological model of information behaviour may be only partially applicable to PHAs and their friends and family members who are living in rural areas. While these individuals do actively monitor their worlds, their monitoring infrequently results in IIA, likely because useful HIV/AIDS information is either not widely available in the surrounding community or is of poor quality. Perhaps as a result, institutional sources appear to play a relatively significant role in IIA for rural PHAs. For example, IIA incidents in our study took place in HIV-focused clinics and organizations, where print resources and posters in the environment become the focus of monitoring. Additionally, several

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PHAs noted that they had observed other PHAs intently in these settings in order to learn more about HIV treatment and health issues. PHAs who signed up for ASO mailing lists were also the only respondents who reported that they had gained HIV-related information through the mail. Therefore, the unspoken assumption ofthe ecological theory of information behaviour—that information sources are just "out there"—does not appear to hold for HIV/AIDS-related information in rural settings, suggesting that a different type of theoretical framework is needed to examine non-purposeful information seeking in such communities. One promising approach, which considers the information assets contained in a given network and how networks members use them, is social capital theory (Field 2003; Johnson 2004; Lin 2001) and may provide a framework for considering the extent to which community members possess the necessary knowledge resources to make IIA occur more frequently and effectively. Finally, our study explores the applicability ofthe concept of information gatekeeping to HIV/AIDS information exchange in rural areas. We have been able to identify several individuals who clearly act as information gatekeepers in their community and who move between specialized biomedical worlds of HIV/AIDS treatment research, clinical care, complex service systems, and the more practical needs of lay people. In so doing, they appear to informally translate and educate about complex HIV/AIDS information, relying on extensive information networks, personal libraries, and the Internet as their own information sources. This fmding is consistent with some reports in other communities that volunteer treatment information experts, often PHAs themselves, are an important source of treatment information for other PHAs (Health Canada 2000). Despite the value of the information gatekeeping concept and its obvious applicability to our own results, it is also clear that there is a great deal of HIV/AIDS information sharing that is not captured by this concept, such as the efforts our study participants have made to challenge others' stereotypes and to educate others near to them about the issues they face. These other types of information sharing suggest that the information gatekeepers concept is not sufficiently robust on its own to capture thefiiUrange of information sharing that takes place in rural communities. Instead, analytical tools must be sensitive to capture information exchange related to HIV/AIDS that does not span boundaries and does not involve purposeful assumption of an information intermediary role. A more powerful tool for understanding the range of information sharing in communities may be social network analysis (Haythornwaite 1996; Wasserman and Faust


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1994), which, while including concepts that imply information gatekeeping, such as brokerage and prominence, also addresses a range of other network features, thereby permitting a more nuanced analysis of the dynamics of information sharing in rural areas.

Conclusion Our preliminary data analysis reveals a range of information behaviours among rural-dwelling PHAs, their friends, and family members that include purposeful information acquisition, incidental information acquisition, and information sharing. The results have been analysed using several theoretical frameworks that demonstrate descriptive power and emergent anomalies. Of particular note are fmdings that reinforce the importance of affective components in information seeking, the presence of monitoring behaviours, and the importance of interpersonal information sources. Results that do not easily fit existing models suggest that further theoretical development and/or different approaches may be needed. Specifically, the role of institutional information sources in the lives of PHAs appears to diverge from what would be predicted on the basis of existing analytic frameworks, for purposeful and incidental information acquisition. In addition, a lack of open discussion about HIV in rural communities, misinformation arising through information exchange in personal networks, and relatively infrequent media coverage act as barriers to the acquisition of incidental information. Finally, while information gatekeepers appear to be present in rural communities, this concept alone does not capture a significant portion of what goes on in local HIV/AIDS information exchange. We intend to address these issues in our fiirther research.

Acknowledgements Funding for this research has been provided from a generous grant from the Canadian Institutes for Health Research as well support from the Action for Health project funded by the Social Sciences and Humanities Research Council of Canada under the Initiative on the New Economy: Collaborative Research Initiatives program. The authors are also grateful for the generous contributions of our study participants and community partners in Newfoundland and Labrador, British Columbia, and Ontario.

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