The role of qualitative research in HIV/AIDS

Introduction Qualitative research, which is primarily inductive and descriptive, provides rich contextual data to further our understanding of social phenomena. Its value is firmly established in behavioural sciences and not merely as a complement to quantitative research 1. Indeed, some have suggested that qualitative research is pivotal to our understanding of the sociobehavioural aspects of HIV disease 2. In describing its role to date, this article will provide illustrations of the variety of methods used by qualitative researchers to gather data, but for the sake of clarity these will be described at the outset. Qualitative research is essentially concerned with observation and experience. Ethnography and participant observation occurs when the researcher observes at firsthand (and as unobtrusively as possible) social behaviour in its natural environment 3. This is especially valuable when we are examining and teasing out the nuances of behaviour, such as drug injecting practices. Most other qualitative techniques involve verbal or written recording of social activity or lifestyle. These include in-depth and semi-structured interviews, where individuals are questioned face-to-face about some aspect of self-reported behaviour. Case studies and diary-keeping are useful methods of recording individual data, and have value in recording intimate behaviour such as sexual activity. At a broader level, focus groups gather together selected individuals to discuss and elaborate on specific issues. Small group discussions can clarify intricate and often sensitive issues (such as condom negotiation) 4. Qualitative research has enabled us to appreciate the subtlety and complexity of HIV-related behaviours and the importance of lifestyle and culture in determining crucial factors, such as risk and negotiation. It has also proved invaluable in formative research and development, especially in mapping the profiles of difficult-to-access social networks of target populations, such as injecting drug users (IDU) and commercial sex workers (CSW). Alongside its distinctive methodological approach, qualitative research operates within a particular inductive theoretical framework. One tenet of this is ‘grounded theory’, which, although not without its critics 5, has powerful practical applications and forms the basis for the main computer packages that are employed for qualitative data analysis. This approach encourages theory building that is firmly grounded in the empirical data. Concepts surface from the raw data and are examined and analysed to form broad thematic headings or categories, which are divided into explanatory and descriptive subcategories. To illustrate further the usage of a qualitative research, I intend to use this first stage of grounded theory to direct this literature review. In the current (somewhat artificial) context, the data and resulting concepts will come from examples of published HIV/AIDS qualitative research, accessed from computer databases and hand-searches. Grounding my review in these data, I will develop categories and subcategories. This process is illustrated in Table 1.Table 1: A grounded theory analysis of HIV/AIDS qualitative research.One of the main contributions of qualitative research to our understanding of HIV/AIDS is the identification and description of salient social behavioural and lifestyle factors. Cultural and contextual factors An appreciation and understanding of cultural and contextual factors are imperative if we are to develop relevant responses. Qualitative research has described the theory and practice of belief systems, the role, influence and potential of traditional healers and has been able to capture cultural and local variations 6,7. Studies such as those spanning Haitian communities 8, Côte d'Ivoire 9, and black women in Los Angeles County, USA 10 have noted that the content of health education messages cannot be divorced from specific notions of transmissible disease and traditional health beliefs. Adaptation Similarly, qualitative research has described the way in which individuals and groups have made adaptations in their everyday lives in response to HIV disease. Maintaining a positive purpose in life has been identified as a factor in adapting to illness and psychological well-being 11,12, as has the development of coping and support strategies outside the orbit of established help. This applies to all those affected by HIV disease, including carers and nurses, although the main body of work has focused on those who are HIV-infected 13–15. A study in San Francisco illustrated the importance of social networks and friends in providing informal support, noting that homosexual men employed this strategy more than IDU 16. Barriers to such support and care have been observed, including the deleterious effect of AIDS on some social and familial groups, and the uncertainty, stigmatization, rejection and social isolation that is often the consequence of an HIV diagnosis 17,18. Forms of care Qualitative work has identified the range of differing forms of care, such as amongst the Baganda women of Uganda, where intergenerational care is still the norm 19. On the other hand, self-care is emerging as a dominant strategy in the more socially fragmented and individualistic developed world. Focus group discussions with HIV-positive women in southern United States noted proactive self-care in a number of life areas, including dietary practices, use and non-use of medicine, physical activity, self-education and spiritual development 20. Such targeted studies are important in identifying particular issues and stressors, such as the gynaecological problems common to HIV-positive women, that require specific care responses 21. Other more general lifestyle issues, such as sexual identity 22, death and bereavement 23, and decisions around sexual activity and celibacy 24 have all been fruitful areas where qualitative research has informed practice. Risk Whereas quantitative studies can examine crucial epidemiological questions, such as trends in prevalence, incidence and behaviour, qualitative research can investigate context and nuance, such as the lifestyle and contextual factors associated with the crucial issue of risk-taking among groups such as homosexual men and IDU 25. Qualitative research has illustrated a wide range of circumstantial, situational and social factors that influence risk perceptions and responses 26–29. Qualitative studies have highlighted the differential risks to IDU of attending varying types of shooting gallery establishments and in identifying the social meanings of HIV risk behaviour 30,31. Negotiation Qualitative research has furthered our understanding and defining of risk negotiation. After a quantitative study revealed a relapse to unsafe sex among young homosexual men in the United States 32, qualitative research was able to examine explanatory contextual factors 33,34. More broadly, qualitative studies have explored the concept of negotiation in relation to women and the sociocultural factors associated with sexual decision-making, especially condom compliance with partners 35. This followed from persistent concern around low levels of condom use amongst heterosexuals. Studies have also examined the way in which risk (often centred on the use of condoms) is negotiated in sexual relationships and by CSW 36. Other studies have taken the analysis further, such as research in Melbourne, Australia, which described risk perception and negotiation by heterosexuals as a discourse between concepts of danger and pleasure 37. Sex and drugs The two most common issues for qualitative studies of risk activity focus on sex and drugs. Commonly, topics relating to sex have looked at factors underpinning decisions around both safe and unsafe sex 38, and attitudes and practice of condom use 39. A study in South Africa, which backed up an initial group discussion with 36 focus groups, identified important considerations that inhibited condom use among students. Reinforcing other studies, these factors included the limiting of sexual pleasure, lack of trust in partner, challenge to the male ego, and association with sexually transmitted diseases 40. Qualitative studies have been prominent in investigating the link between injecting drug use and HIV-related risk behaviour. Some have described the relationship between drug use and unsafe sex, such as a comparative study of US heroin and crack cocaine users, where the latter were more likely to sell sex for drugs and were also more likely to be involved in high-risk sex 41. But the main vector for HIV infection amongst IDU is the sharing of injecting equipment, with factors such as relapse to drug use and homelessness being important triggers to high risk behaviours 42. Sharing injecting equipment A salutary example of the potential for qualitative research to enhance and fine-tune our knowledge of the social aspects of HIV/AIDS concerns the sharing of drug injecting equipment. Epidemiological studies noted that sharing of needles and syringes was a vector in the spread of HIV disease 43,44, and subsequently, that health promotion and needle and syringe-exchange schemes have reduced sharing rates amongst IDU 45. However, qualitative research has succeeded in broadening the picture. First, in identifying the complexity of the issue when related to sexual behaviour, and second, in describing the varying dimensions and practices of sharing injecting equipment. In-depth interviews amongst IDU in San Francisco during the 1980s found that many drug-using sex couples routinely shared injecting equipment 46. This was being overlooked and unrecorded in quantitative studies, as such couples did not consider this to be ‘sharing’, as commonly defined. Rather, as the research discovered, it was viewed as a mere extension of their conjugal lives, an integral part of the couple's intimacy, especially when libido had been reduced by extensive opiate use. Qualitative research has also improved our knowledge and understanding of injecting techniques and their relevance to risk. Ethnographic work graphically described the sharing practices of front- and back-loading when preparing drugs for injection 47. Endemic to these practices (where drugs are transferred from one syringe to another) are risks of infection that might well be missed in any simple quantifying of the generic notion of needle and syringe sharing. Around the same time, observational work in the United States revealed the common practice of sharing drug injecting paraphernalia, such as water, spoons and filters 48. In England, participant observation and confirmatory focus groups showed how the sharing of drug injecting paraphernalia was an entrenched part of drug use norms and social etiquette 49. Studies also identified and described the kinds of informal protective coping strategies that IDU were adopting to reduce the likelihood of infection 50,51. Sensitivity The non-intrusive and subtle nature of qualitative research has been particularly appropriate in examining sensitive HIV-related issues. Sexual activity and disclosure Imaginative techniques have been used to elicit sensitive and intimate information on sexual activity, such as the coded diaries used to collect detailed data on homosexual men's sexual behaviour 52. Focus groups and follow-up telephone interviews were used to explore the very personal factors involved in couple- level decisions on sex 53. Other studies have used focus groups and in-depth interviews and surveys to investigate issues such as partner infidelity 54, power relations, decision-making and negotiation in sexual partnerships 55 and commercial sex work 56. Similar methods have been used to discuss and examine fears and concerns around disclosure of HIV-positive status 57. Children Researching the knowledge and attitudes of children regarding a matter such as HIV disease requires skill and sensitivity. Careful observation alongside individual and small group interviewing have been used to gather data on children's understanding and concerns around HIV/AIDS. A study among street children in Haiti used a combination of sensitive qualitative methods as the initial stage in an action research project 58. Similarly, another study used 27 small group discussions to examine children's general knowledge about AIDS 59. Such work is important in developing tailored interventions and ensuring that health promotion and risk-reduction messages match the profile of the target group. Attitudes to HIV/AIDS Qualitative research has been used more generally to describe attitudes and knowledge concerning HIV, especially in the early years of the epidemic. Caring professions Attitudes and knowledge amongst those in the caring professions have been important avenues of enquiry in understanding and improving the mechanics of service delivery. Studies have looked at perceived occupational hazards of working with and caring for those with HIV disease among dentists 60, community health nurses 61 and general nurses 62,63. Target groups Complementary data have been collected on a wide range of consumer and target groups. This has included AIDS knowledge and perceptions of risk among female sex partners of IDU 64, urban African American and Hispanic youth 65, IDU in Bangkok, Thailand 66, parental views on HIV/AIDS services for children 67, and the influence of attitudes around AIDS upon levels of blood donation 68. Formative evaluation As many of the populations at high risk of HIV infection (homosexual men, IDU, CSW) are often hidden and not clearly defined, it is important that we obtain descriptive profiles where possible. Mapping Qualitative research has been prominent in formative evaluations, especially in terms of mapping, and the exploratory and inductive methodological tool-kit available to the qualitative researcher is well suited to this task. This not only assists the development of any subsequent intervention, but it also helps in the planning of further phases of research. There are many examples in the literature, from describing the social origins of CSW in Thailand 69 to identifying ethno-cultural communities prior to the development of an intervention in Canada 70, through to the mapping of risk networks amongst IDU in New York 71. Mapping has been used to outline locations and characteristics of congregation sites of target groups, such as the identification, charting and construction of a typology of shooting galleries, referred to above 30. This was done to better understand the workings of arenas where IDU congregated so that bleach distribution could be targeted more effectively. The existence of shooting galleries had long been established in the qualitative literature, including the important role of ‘hit doctors’, who specialize in injecting inexperienced users 46,72. Contacting target populations Complementing this category of mapping populations is the use of qualitative research to contact target populations and to engage difficult-to-access groups. This has antecedents in the pioneering qualitative research of the Chicago School 73–75, where key informants or gate-keepers were viewed as crucial entry-points to hidden populations. In later years, an imaginative link was made between academic research and service delivery. This combined ethnographic and epidemiological techniques to describe local drug dealing areas and the social networks and social structures of IDU and sellers, in order to assess the appropriateness of competing intervention strategies 76. The practical application of this work illustrated and identified ways in which ethnographic techniques could be utilized to respond quickly and appropriately to public health problems 77. In the AIDS epoch, mapping of target populations has also resulted in the qualitative researcher, especially as ethnographer or participant observer, nurturing and forging trusting and sensitive links with respondents. Three distinct features can be identified here. First, contacting respondents for research interviews. 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