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Editorial Review

The role of qualitative research in HIV/AIDS

Power, Robert1,2

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1Department of Sexually Transmitted Diseases, University College London Medical School, London, UK.

2Requests for reprints to: Dr Robert Power, Senior Lecturer in Medical Sociology, Department of Sexually Transmitted Diseases, University College London Medical School, The Mortimer Market Centre, Mortimer Market, off Capper Street, London, WC1E 6AU, UK.

Date of receipt: 17 September 1997; revised: 23 January 1998; accepted: 18 February 1998.

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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
Table 1
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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.

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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.

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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].

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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.

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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].

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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].

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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].

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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].

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The non-intrusive and subtle nature of qualitative research has been particularly appropriate in examining sensitive HIV-related issues.

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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].

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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.

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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.

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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].

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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].

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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.

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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].

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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. Second, contacting respondents as nodal points to access networks, whereby strategies such as snowballing and nomination techniques can be applied [78]. Third, recruiting key informants or ‘indigenous fieldworkers’ to be trained as research workers or health advocates.

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Health advocacy

This third subcategory has emerged as a vital component of the community-based response to HIV/AIDS, especially targeting injecting drug use, through what became known as the indigenous leader model [79]. This model relied heavily upon qualitative researchers to conduct mapping exercises, but also to recruit respondents to act as indigenous fieldworkers or peer educators [80]. Similarly, qualitative methods have been used to contact and recruit CSW into peer education programmes [81]. Indeed, the much lauded ‘gay heroes’ project was developed along the lines of the indigenous leader model by utilizing qualitative data and methods to contact and recruit health advocates to work in gay bars and sex venues [82].

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Process evaluation

The recent criticism of the evaluation of sociobehavioural HIV/AIDS interventions has led to the promotion of the randomized controlled trial as the methodological gold standard [83,84]. However, the randomized controlled trial is not always the most appropriate tool for evaluation of sociobehavioural interventions [85], and we should place as much emphasis on process as on outcome measures. We need as much to assess the viability and acceptability of an intervention to the target group, as to test whether certain outcome goals have been achieved. It is in the area of process evaluation that qualitative and quantitative methods can most productively be employed in a complementary manner.

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Service delivery

In terms of process evaluation, qualitative research has looked at the mechanics of service delivery around HIV testing, pointing to the need for detailed description of the factors leading to various outcomes of testing [86]. It has also examined the reasons behind low-risk individuals taking a test (which include pressure from lovers and parents, and symbolic closure or commencement of sexual relationships) [87], as well as the reasons behind non-testing (such as fear of psychological consequences and absence of cure) [88].

Another aspect of process evaluation and service delivery concerns staffing and the impact of HIV disease on professional carers. Qualitative research on burnout has examined the negative aspects of working with HIV disease (such as fatigue and helplessness among nurses) [89], but also the way in which the rewards of care-giving may counter-balance experiences that would otherwise lead to burnout [90].

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Intervention efficacy

A review of 37 US grant-awarded AIDS prevention and service projects included qualitative analysis that identified eight factors facilitating intervention efficacy [91]. Qualitative process evaluation of service efficacy has taken place at a variety of levels. For example, at the national level, a qualitative assessment examined the process of health policy making (including HIV) in Costa Rica [92]. On the other hand, qualitative methods have been used at the microlevel, such as in a process evaluation of psychodynamic group therapy with adolescents [93].

A crucial aspect of service efficacy and delivery concerns acceptance and satisfaction, both on the part of the clients and the staff. For instance, descriptions of user views of services have added to our understanding of the process of delivering HIV testing and counselling [86]. At another level, in Canada, qualitative research examined the process and validation of guidelines for HIV counselling [94].

Stressors relevant to treatment acceptance and adherence have been studied, including such contributing factors as social stigma, uncertainty regarding the future, disclosure of HIV status, monitoring of HIV illness, seeking social support, relapse to chronic substance use and mental disengagement [95]. Others have looked at levels of satisfaction with existing services, such as a comparison of the views of homosexual men and IDU in San Francisco and satisfaction with health- care services, which showed that although the IDU received more care, both groups were equally satisfied [96]. Similarly, qualitative research has also looked at potential service users (as well as actual users), examining issues such as the nature and quality of clinic-based services, where respondents reported high levels of anxiety and negative preconceptions of genitourinary medicine [97].

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Action research

Qualitative methods have been utilized in action research projects, especially those geared to refining service delivery. Exploratory focus groups are often used as a medium to identify arenas and agents for change. In one study it was noted that the nature of care for AIDS patients differed from that of other terminally ill patients, and a seminar series was included as part of an action research project to educate hospice staff [98]. With a different output in mind, focus groups, personal interviews and clinic observations in the South Bronx and Queens in New York were used to inform the development of culturally sensitive video-based materials [99].

Action research projects are often short-term and single focused. Examples include relating experience of hospital care to care planning [100] and identifying key characteristics of culturally acceptable counsellors, such as took place in Tanzania, through the use of interviews and focus groups [101]. Another example was the need to discover the illness classification system of healers in the Manica Province of Mozambique. The main aim of this action research project was to develop empirical, culturally appropriate strategies for communication between the government and traditional healers in relation to prevention of sexually transmitted diseases including AIDS [102].

Action research may also be directed at particular target groups, such as devising relevant means of disseminating effective risk-reduction messages to CSW [103], using focus groups to promote programmes devised to reduce risk behaviour among minority black and Hispanic women in the United States [104], and using qualitative data on negative appraisal of local HIV services to improve coverage for target populations [105]. In Israel, Operation Solomon used a multimethods evaluation to select, train and operationalize Ethiopian migrants as health educators and cultural mediators [106].

Formative research using qualitative methods is often an integral part of action research. This is especially the case where mapping of the target population or precise descriptions of research arenas are precursors to the research and development project. Such a project in South Africa stipulated the need for formative qualitative research into the social context and cultural meanings of salient behaviour as a prerequisite for AIDS education programmes in schools [107].

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As this review has revealed, qualitative research has contributed significantly to our understanding of and responses to HIV/AIDS. Furthermore, it has proved to be both a complement and foil to quantitative studies. Qualitative research may pick up and clarify issues and phenomena identified by quantitative studies (or vice versa) [109–111]. Similarly, it may seek to fill gaps in knowledge and sociocultural contexts that are not amenable to quantitative enquiry. Again it might work in tandem with quantitative researchers to examine a hypothesis generated by a qualitative study. For example, ethnographic research amongst IDU noted that in consuming drugs the sharing of filters was closely linked to hospitality and injecting rituals. This qualitative finding was verified when relevant questions were appended to a World Health Organization multicity study which collected data from 500 British IDU [112].

However, this emerging paradigm of complementary methods and approaches should not restrict the scope of qualitative work. We must not lose sight of the potential for qualitative research to be imaginative and innovative. Unique data can be generated by insight, chance, serendipity, happenstance and the imaginative application of flexible methods. For instance, accounts of events have been used to create a typology and analysis of the explanation for episodes of unsafe sex [113]. Decision tree modelling was used to examine the social context and social rules pertinent to needle sharing amongst IDU [114] and vignettes have been constructed from ethnographic and interview observations to assess risk behaviour intention [115].

There are, of course, areas where the application of qualitative research can be improved. For one, there needs to be more self-criticism in relation to respondent recruitment and sampling techniques. Too often, where the focus is on contacting and researching hard-to-reach groups (such as IDU or CSW), there is an over-reliance on snowballing or convenience sampling [116]. In order to eliminate sampling bias and the danger of repeating studies amongst the same social networks, more rigorous techniques, such as random nomination selection, need to be considered [117]. On a similar theme, the reliance on casually employed interviewers to collect research material needs to be balanced by project researchers gaining firsthand contact with the data, especially through participant observation and visits to fieldwork sites. This not only keeps the researcher in touch with the field of study, but also acts as a validity check, especially where data collection is through self-reports. Without this, an overdependence on casual (or indigenous) interviewers collecting self-reported data runs the risk of placing a number of layers between the social behaviour being studied and the creation of texts.

We need to bring more rigour to qualitative research (particularly that which relies largely on self-reported behaviour) and attention needs to be paid to reliability and validity issues, including intraquestionnaire checks, triangulation of data sources and random re-interviewing of cases. More direct observational and ethnographic research would also be of great intrinsic value in deepening our understanding of HIV/AIDS. The growing popularity of certain qualitative methods, such as focus groups and in-depth interviews, should not preclude more intense, time-consuming, yet fruitful, ethnographic and anthropological studies. Notwithstanding these caveats, there can be little doubt that qualitative research will continue to make a significant contribution to the social aspects of AIDS and other arenas of health and illness.

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Qualitative; HIV; AIDS; methodology

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