vol. 13 no. 4, December, 2008
The arrival of combination therapy in the mid-1990s had the almost immediate effect of transforming HIV infection from a terminal to a manageable condition. Unlike other chronic diseases, however, HIV remains highly stigmatised due to its infectious nature and its historic association with marginalised populations. Existing research into information use by people living with HIV typically addresses issues of availability, access and source preference. What remains poorly understood is how health information is experienced within the context of everyday life and how HIV information is assimilated and managed by the individual (Hogan and Palmer 2005).
This study investigates the information world of HIV+ gay men from the perspective of their personal histories and their home environment. Building on the research of Chatman (1992), an ethnographic approach is used to understand how such men inform their health and develop a body of knowledge over longer periods of time. Buckland's (1991) concept of information-as-thing is used to anchor this information world within the domestic setting. It is expected that how gay men with HIV inform themselves and create an informed living space will be highly reflective of their past and present life experiences.
Three questions are put forward:
Purposive sampling techniques were used to recruit 24 men into the study between October 2007 and August 2008. The three selection criteria were age (minimum 18 years), sexual orientation (must self-identify as gay) and HIV status (minimum HIV diagnosis of 2 years). Meetings were held in participants' homes, with five data collection methods used in the following sequence:
The meetings averaged 2:45 hours in length (range: 2:00 to 4:30) and were held with men in five cities in the north of England. All of the participants identified as White British or White European. The average age was 41.9 years (range: 26.4 to 57.6 years), with an average length of time since diagnosis of 9.8 years (range 2.3 to 21.9 years). Only 4 participants (17%) were not receiving antiretroviral treatment. Most of the men either lived alone (n=11, 46%) or with a male partner (n=10, 42%). Eleven (46%) had completed at least one university degree, with 7 (29%) working full time, 2 (8%) part time, and 15 (63%) receiving government assistance. Eight (33%) reported having a record at home of their most recent CD4 and viral load test results. And while 19 men (79%) had home Internet access, only 9 (38%) had used the Internet in the previous 30 days to search for information about HIV.
A single information world, no matter how thickly described, could never wholly encapsulate the experiences of the men in this study. Nevertheless, sufficient overlap was observed among participants to indicate they shared broad patterns of meaning in how they informed themselves of a life with HIV. A central facet of this information world is a delineation between information about HIV as a disease (i.e. a pathology of the body) and HIV as an illness (i.e. a socially experienced state of ill health). While the men were generally well informed about HIV as a disease, they limited the presence of biomedical information in the home. Instead, direct experience of HIV as an illness (either their own or that of other gay men) was used to inform everyday life with HIV.
Health information NOT found in the home: Externally sourced biomedical information was largely absent from the homes of the men. Print materials about living with HIV were not common despite the ready availability in the UK of excellent publications at little or no cost. The Internet, while regarded as important resource, was in practice used to access health information on an infrequent basis. Only one in three men kept records of their clinical test results for CD4 and viral load levels, and almost none had notes about their medications or HIV-related illnesses, past or present, despite an advocacy within HIV service agencies and publications to be proactive on this area.
Health information found in the home: Participants frequently spoke of either not wanting reminders of HIV in their home or of no longer thinking about HIV on a daily basis. Other than systems for organising and adhering to antiretroviral medication, health in the domestic setting was informed by efforts to re-establish a sense of normality. Family members (parents, partners, siblings) served as formal and informal recorders of health information, in some cases accompanying men to all their appointments and maintaining separate sets of records.
Within the context of their lives as gay men, the participants typically had a high degree of awareness of HIV positivity prior to diagnosis. Their infection resulted not from a lack of information but from personal circumstances that led either to believing themselves not be be at risk or to disregarding their being so. Once diagnosed, the men's information world emphasised strong links to other gay men living with the virus. While open about their sexual orientation to HIV specialist doctors and nurses, participants were far less likely to disclose personal information (including HIV status) in medical or personal settings unless doing so was seen as safe and necessary. For example, participants' use of recreational drugs was seldom revealed to health professionals, therein limiting the men's access to biomedical information about possible interactions with antiretroviral medication.
A detailed analysis is presently underway of five information practices and three information relationships identified as central to the men's information world. Information practices are defined for the purposes of this research as information-related activities originating from the dialectical relationship between an individual and his sociocultural environment (see in particular Savolainen 2007 and Talja et al. 2004). The practices being analysed include a man's personal history of sexual orientation, his links to the gay community, the place of HIV specialists doctors in his treatment, the importance of print and electronic resources in his everyday life, and his organisation of the home environment. Information relationships, by contrast, is a term developed by the author to describe those arenas in which the health information available to a man is impacted by the degree and nature of the personal information he makes available about himself. In the present study, such relationships include relations between the man and his family and friends, health information exchanges in the workplace, and the negotiation of information with health care providers.
The men in this study informed their experience of HIV in part using practices and relationships developed initially prior to infection. Knowledge about HIV and safer sex had typically been incorporated into their everyday lives as openly gay men well before infection. Post-diagnosis, their information world incorporated a higher degree of biomedical health information, particularly in terms of understanding clinical test results and antiretroviral treatment options. But biomedical information activity was paralleled closely by practices through which the men inform themselves using the personal knowledge that comes with living with HIV. This experiential information is essential for dealing with the social complexities of everyday life. The men also developed practices to control the disclosure of personal health information in ways that mirror those employed to deal with issues around sexual orientation. A full analysis of the data should be complete by mid-2009.
The author would like to thank the participants for their candour and openness in discussing personal experiences. He also thanks his supervisors, Dr. Peter Bath and Dr. Kendra Albright, for their invaluable contribution to this research.
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