**5.1. The qualitative interview**

**• Reflexive action and interaction:** the concept of reflexivity refers to how people who are interacting maintain the presumption that they are guided by a certain reality. In other words, humans interpret signals, words, gestures and information provided by other humans in a way that supports a certain view of reality. Even contradictory evidence is

**• Indexicality:** this term refers to phrases in which meaning varies depending on the context. It is therefore considered that all explanations must be interpreted within their specific

The sociological theories described in the previous section allow for investigating the phe‐ nomenon of HIV from its essential premise: HIV is a complex and dynamic social phenomenon that acquires different meanings depending on the social and cultural context of each society. These meanings, representations, perceptions, beliefs, values and life experiences will give meaning to and guide the behaviour and actions of people in relation to HIV. Furthermore, these different values and meanings influence the preventive practices that people adopt against HIV. Therefore, it is evidenced that there are qualitative aspects to the HIV phenom‐ enon that also need to be known in order to prevent and eradicate the pandemic [10]. For this reason, most of the interventions being carried out in this field take the social dimension of

Therefore, sociological theories described in the previous section allow for grasping the qualitative aspects of HIV. However, the study of HIV using these sociological theories can only be developed from qualitative research strategies. In the scientific arena, the discipline that has traditionally investigated HIV has, however, been clinical epidemiology. For this reason, the research found in scientific literature is mostly prevalence and/or ecological studies. Consequently, in overall terms, there is a predominance of knowledge based on data that mainly describes how the epidemic is distributed among the population, depending on certain factors [10]. Furthermore, the qualitative factors that define the phenomenon of the HIV epidemic have evidenced the need for developing research methodologies that enable the study of the epidemic, transcending the simple observation of how it is quantitatively

Using a qualitative methodology allows us to understand and comprehend the phenomenol‐ ogy of HIV from the perspective of the actors, as it focuses the way people interpret and give meaning to their experiences and the world in which they live. It approaches social reality from a holistic perspective, trying to explain, describe and understand people's discourses on a particular social phenomenon [41]. In brief, seeking the meaning of phenomena is the main

A qualitative methodology is equipped with multiple data collection or production procedures that share common aspects, such as the understanding of social phenomena [43] or the

reflexively interpreted to maintain beliefs and knowledge.

38 Trends in Basic and Therapeutic Options in HIV Infection - Towards a Functional Cure

**5. Research methodologies for studying the HIV pandemic**

context.

HIV into consideration.

distributed within a certain population [10].

function of "the so-called qualitative" [42].

The origin of qualitative interviews may be traced through the fields of anthropology, sociology, psychology and journalism. In the 19th and early 20th centuries, this approach began to be consciously applied in social research [45]. It is important to distinguish between the social research interview – in its different formats – and other types of interviews, such as those carried out by health professionals during the course of their duties. Although there are multiple differences, their objective – that is, the purpose of the social research interview – may be highlighted thus: "the research interview intends to construct [a] social sense of the individual's behaviour or of the behaviour of the individual's reference group, by gathering a set of personal data" [46].

Presenting a single concept of the qualitative interview is complicated, because both the conceptualization and the practice of the interview are determined by the different paradig‐ matic perspectives and positions adopted in relation to qualitative research. Therefore, the diversity of interview styles and manners is fairly heterogeneous. This heterogeneity causes some authors to talk about qualitative "interview families", as in the case of Herbert J. Rubin and Irene S. Rubin [47], who include in this category interviews that have a *semistructured* format (in reference to the focalized interviews of Merton and collaborators) and those that are *unstructured* (referring to the works of Douglas [45]. They also define a *combined modality,* present in many qualitative interviews, where there are "parts that are more structured and others that are less structured, however the balance between them varies" [45]. The different styles and forms of interviews determine if they are more or less structured. There is not only one way of interviewing a person; nonetheless, depending on the higher or lower level of flexibility of the guide, interviews will be more or less structured. They can thus be classified in the following way:


**• In-depth interviews:** also termed "open-ended interviews". These generally cover only one or two themes, but in greater depth. The rest of the questions that the researcher asks emerge gradually from the answers of the interviewee and focus fundamentally on the clarification of details, with the aim of delving deeper into the theme being studied.

In this sense and from a phenomenological perspective, supported by authors such as Taylor and Bogdan [43], the in-depth interview must be understood as "repeated face-to-face encounters between the researcher and informants directed toward understanding inform‐ ants' perspectives on their lives, experiences or situations as expressed in their own words". According to these authors, in-depth interviews are appropriate in the following situations:


The qualitative interview is adequate for approaching people's experiences. It is a tool with a communicative character that attempts to capture the meanings mediated by the constructions that subjects build on the basis of their experience. Thus, in the case of HIV-positive people, as in the case of other social phenomena "contrasted with disease, which is a concept of biology –more specifically, of pathology– illness is a phenomenon which is apparent to the *individual* in terms of an altered state of perception of self" [41]. Therefore, the assessment carried out by a doctor is objective, differing from the subjective perspective of the ill person, because he/she is the one whose life is affected by HIV. For this reason, through the discourse that results from the interview, knowledge is generated about the life experiences, feelings, thoughts and perceptions of people that are HIV-positive. In addition, the meanings, norms and values created by people are binding on the members of a group, because they generate and condition people's behaviour. This is why the qualitative interview can help to explain the behaviour people demonstrate towards HIV and its treatments.

The qualitative interview is very useful in the field of studying the HIV phenomenon "when the hypothesis is a conflict between norms. On the one hand, there are norms which are dominant, referential, usually reproduced in discourses because they conform to what has been legitimated, what has to be said. On the other hand, there are norms in practice, repro‐ duced in practice" [41], i.e., what is really done. Therefore, the relevance of its use in the prevention of HIV results from the knowledge provided when there is a divergence, or conflict, between social norms. For example, health professionals and the population in general point out the non-existence of stigma and discrimination of HIV-positive people in their discourses. However, they may be carrying out practices that lead to the stigmatization and discrimination against people affected by HIV. Furthermore, HIV-positive people may be acting in a way different to that which would normally be expected and might not be adopting preventive practices recommended by health services (legitimated discourse). For this reason, patients make evaluations on the basis of their own direct experience. In this sense, communicating to the ill person what he or she should do facing the illness in general and in particular towards its prevention is complex, because the patient is the one who is emotionally involved in a way that no else is. Therefore, the patient evaluates their condition based in their own experience. This self-evaluation is key to overcoming the illness, important in the adaption process to the illnessand in the preventive practices put in place. Consequently, the interview technique is highly relevant for identifying "above all, what is really done, or what is really thought, as the expression of following norms which deviate from the general norm" [41].

One advantage often emphasized when applying this qualitative technique is its suitability for ensuring the confidentiality of the serostatus interviewee, as opposed to other group qualitative techniques. Another advantage, because of the atmosphere of trust and privacy created between the interviewer and the interviewee, is the degree of freedom that respondents reach when responding to questions, which leads to expressing in confidence their experiences and opinions about HIV. On the other hand, a limitation that has been noted of this approach is that to achieve a degree of saturation sampling, a larger number of interviews must be conducted as opposed to other group qualitative techniques, resulting in research that is costly both in terms of time and financial budget.

#### **5.2. Focus group**

**• In-depth interviews:** also termed "open-ended interviews". These generally cover only one or two themes, but in greater depth. The rest of the questions that the researcher asks emerge gradually from the answers of the interviewee and focus fundamentally on the clarification

In this sense and from a phenomenological perspective, supported by authors such as Taylor and Bogdan [43], the in-depth interview must be understood as "repeated face-to-face encounters between the researcher and informants directed toward understanding inform‐ ants' perspectives on their lives, experiences or situations as expressed in their own words". According to these authors, in-depth interviews are appropriate in the following situations: **1.** Where there is a wish to study events from the past, or it is not possible to have access to a particular type of setting and subsequently the settings, or the people, are not accessible

**3.** When there are time constraints on research in comparison with other techniques, such as participant observation. Interviews permit for the more efficient use of time.

The qualitative interview is adequate for approaching people's experiences. It is a tool with a communicative character that attempts to capture the meanings mediated by the constructions that subjects build on the basis of their experience. Thus, in the case of HIV-positive people, as in the case of other social phenomena "contrasted with disease, which is a concept of biology –more specifically, of pathology– illness is a phenomenon which is apparent to the *individual* in terms of an altered state of perception of self" [41]. Therefore, the assessment carried out by a doctor is objective, differing from the subjective perspective of the ill person, because he/she is the one whose life is affected by HIV. For this reason, through the discourse that results from the interview, knowledge is generated about the life experiences, feelings, thoughts and perceptions of people that are HIV-positive. In addition, the meanings, norms and values created by people are binding on the members of a group, because they generate and condition people's behaviour. This is why the qualitative interview can help to explain the behaviour

The qualitative interview is very useful in the field of studying the HIV phenomenon "when the hypothesis is a conflict between norms. On the one hand, there are norms which are dominant, referential, usually reproduced in discourses because they conform to what has been legitimated, what has to be said. On the other hand, there are norms in practice, repro‐ duced in practice" [41], i.e., what is really done. Therefore, the relevance of its use in the prevention of HIV results from the knowledge provided when there is a divergence, or conflict, between social norms. For example, health professionals and the population in general point out the non-existence of stigma and discrimination of HIV-positive people in their discourses. However, they may be carrying out practices that lead to the stigmatization and discrimination against people affected by HIV. Furthermore, HIV-positive people may be acting in a way different to that which would normally be expected and might not be adopting preventive

of details, with the aim of delving deeper into the theme being studied.

40 Trends in Basic and Therapeutic Options in HIV Infection - Towards a Functional Cure

**2.** The research depends on data from a wide range of people or settings.

**4.** The researcher wishes to focus on the subjective human experience.

people demonstrate towards HIV and its treatments.

in any other way.

Research studies in the health care field primarily use focus groups and to a lesser extent, discussion groups. The focus group, also called the "group interview" [49], tends to be considered as "One specific technique within the broader category of group interviewing to collect qualitative data. The hallmark of focus groups is the explicit use of group interaction to produce data and insights that would be less accessible without the interaction found in a group" [50].

The focus group is a technique that initially emerged in North American sociology as an extension of the focalized interview; coherently, its model is inquiry via questionnaire. The group modality reveals more nuances and more diverse responses than the individual interview, but always in a context of strong directivity in which a progressive logic prevails (step 1, step 2, etc., of the questionnaire). The group is constantly kept dependent on the moderator, who promotes the contrast between individuals rather than a group dynamic [49]. In this methodological practice, there is always a guide containing questions related to the research objective. The questions are aimed at the people who participate in the group, to be answered by the group. The researchers prefix the questions in the guide.

In its most extreme form, the focus group is a directive technique, because discussion among participants is non-existent if they simply respond to the moderator's questions one by one. However, in its more open form, there is the possibility of debate around explicit positions, in which the conversation is limited only to registering stated opinions [49]. It is also a structured technique, which uses the reflections of a group of people to reveal in-depth information on the theme being studied. It essentially consists of moderating a debate between a group of people who share certain experiences (possibly HIV), sociodemographic characteristics (age, socioeconomic level, etc.), with the objective of discussing and reflecting on the different viewpoints of the theme. Creating a permissive ambiance is a key element for the discussion of these different points of view [49].

Quite often, focus groups and discussion groups are confused with one another. Although they have similarities, they also exhibit multiple differences. One difference worth highlighting is that the discussion group is designed to investigate the common areas of a group of people who, when placed in a discursive situation (conversation), tend to represent discourses that are more or less typical of the social groups to which they belong. However, in the group interview, a personal point of view prevails; hence, people listen as a group but answer as single interviewees [51]. The focus group is therefore a very useful qualitative technique for designing and assessing programmes and services. For example, for assessing user needs and satisfaction, identifying obstacles for implementation, developing educational materials, or assessing the quality of services. It is also useful for researching a certain phenomenon of interest, as in the case of HIV, especially when the aim is to understand attitudes and percep‐ tions towards risk and behaviour, or to analyse cultural beliefs and values. Finally, the focus group is useful for the development of adequate measuring instruments aimed at the target population [52].

The focus group can be used as a research and assessment method, or as a complementary measure to other qualitative and quantitative methods, and is recommended when the objective is to learn about participants' experiences and perspectives. It is highly useful for studying what participants think of the group, but is especially valuable for finding out *why* they think the way they do [53]. Through this methodological practice, we may analyse the discourses produced by a group. This is useful for identifying user needs and satisfaction, and knowing the different points of view of key people regarding a theme as conflicting as the HIV phenomenon.

An advantage of this type of group technique is the fact that it allows for obtaining a large degree of information, as it reaches its saturation sampling level with fewer groups needing to be conducted. However, it has the disadvantage –as it happens in the case of the confiden‐ tiality of HIV serostatus– that it does not preserve discretion in front of the various components of the group.

#### **5.3. Life history**

Different social research techniques are included under the heading "biographic documents" (biographies, autobiographies, diaries, letters, life histories, etc.). Although these share common assumptions, their application is very different. The choice of one over another will depend on each approach's adequacy concerning the research objective. Among biographic documents, life history has been consolidated as one of the most efficient sources for obtaining data.

The aim of the life history is to collect a person's overall life history. The person involved is considered a key informant. Due to its scope, the life history is collected over an extended period of time. It tends to be exhaustive, using other testimonies or documents to corroborate or complete data. This technique is used when an exceptionally rich biographic narrative is available and the narrative corresponds to an extremely singular subject [54]. According to Sarabia, the term, "life histories" describes both stories of an entire lifetime and partial narratives related to certain life stages or biographic moments. Furthermore, it is worth noting that the term refers not only to the narrative, but also to all information gathered about the life under study (information from school stages, health care sources, etc.) and, obviously, to the analyses carried out by the researcher or researchers [55].

The use of life history as a research technique presents both advantages and limitations. According to Valles [45], some of the primary advantages that are worth noting are:


Similar to the individual interview, this qualitative data collection technique can prove to be extremely appropriate, due to the privacy guaranteed to individuals, which requires preserv‐ ing confidentiality and anonymity, as is the case when involving HIV-positive people.

#### **5.4. Observation**

socioeconomic level, etc.), with the objective of discussing and reflecting on the different viewpoints of the theme. Creating a permissive ambiance is a key element for the discussion

Quite often, focus groups and discussion groups are confused with one another. Although they have similarities, they also exhibit multiple differences. One difference worth highlighting is that the discussion group is designed to investigate the common areas of a group of people who, when placed in a discursive situation (conversation), tend to represent discourses that are more or less typical of the social groups to which they belong. However, in the group interview, a personal point of view prevails; hence, people listen as a group but answer as single interviewees [51]. The focus group is therefore a very useful qualitative technique for designing and assessing programmes and services. For example, for assessing user needs and satisfaction, identifying obstacles for implementation, developing educational materials, or assessing the quality of services. It is also useful for researching a certain phenomenon of interest, as in the case of HIV, especially when the aim is to understand attitudes and percep‐ tions towards risk and behaviour, or to analyse cultural beliefs and values. Finally, the focus group is useful for the development of adequate measuring instruments aimed at the target

The focus group can be used as a research and assessment method, or as a complementary measure to other qualitative and quantitative methods, and is recommended when the objective is to learn about participants' experiences and perspectives. It is highly useful for studying what participants think of the group, but is especially valuable for finding out *why* they think the way they do [53]. Through this methodological practice, we may analyse the discourses produced by a group. This is useful for identifying user needs and satisfaction, and knowing the different points of view of key people regarding a theme as conflicting as the HIV

An advantage of this type of group technique is the fact that it allows for obtaining a large degree of information, as it reaches its saturation sampling level with fewer groups needing to be conducted. However, it has the disadvantage –as it happens in the case of the confiden‐ tiality of HIV serostatus– that it does not preserve discretion in front of the various components

Different social research techniques are included under the heading "biographic documents" (biographies, autobiographies, diaries, letters, life histories, etc.). Although these share common assumptions, their application is very different. The choice of one over another will depend on each approach's adequacy concerning the research objective. Among biographic documents, life history has been consolidated as one of the most efficient sources for obtaining

The aim of the life history is to collect a person's overall life history. The person involved is considered a key informant. Due to its scope, the life history is collected over an extended period of time. It tends to be exhaustive, using other testimonies or documents to corroborate

of these different points of view [49].

42 Trends in Basic and Therapeutic Options in HIV Infection - Towards a Functional Cure

population [52].

phenomenon.

of the group.

data.

**5.3. Life history**

Observation is a common activity in everyday life. This type of common and generalized observation can be transformed into a powerful social research tool, and a scientific technique for data collection, when applied in the following ways:


Participant observation may be considered the prime example for illustrating that qualitative research methods are more akin to practices than techniques [42]. There are multiple defini‐ tions of participant observation. According to Taylor and Bogdan [43], the expression "par‐ ticipant observation" is used to define research that involves the social interaction between the researcher and the informants within the informants' context, a process during which data collection is conducted in a systematic and non-intrusive manner. Marshall and Rossman [56] define it as "The systematic description of events, behaviours and artefacts in the social setting chosen for study" [56]. It therefore involves observing the context by means of integrating the researcher into the everyday life of the observed group, in a manner that is neither unstructured nor covert. Participant observation provides not only descriptions of people, events and interactions that occur between people, but also of the experience, life experiences and sensations of the researcher [44].

The primary use of participant observation is to be found in the study of that which falls relatively outside the norm: that which is still not understood, is incipient, relates to other cultures, half-hidden or clandestine groups, as well as that which tends to be confined to institutions (whole institutions, work centres, laboratories, etc.). In other words, in those places where what is normal is bracketed and where it is understood that things are socially different to what is considered either normal, or to what appears in the institutions' formal discourses [42]. Consequently, participant observation is especially useful for in-depth studies of the everyday life of organizations, institutions and social groups that occupy a peripheral space within society. In the area of health care, this means using it to study the everyday and organizational lives of health centres, specific professional associations, hospital wards, etc. [42]. Participant observation is adequate when seeking to reveal the practical rules of a community, group, organization or institution.

Participant observation is defined by the interaction between the observer and the observed, within the context of the observed, and therefore involves the importance of the community setting that is to be observed. Choosing the settings to be observed is of the utmost importance for the research, as not all settings allow for the presence of an observer, nor are they susceptible to being observed. The particular research determines the selection of the setting and the scenario that will be observed, and not the other way around [43].

Therefore, participant observation reveals the practical rules of people affected by HIV when in a group, of the associations of HIV-positive people, of health service organizations and of the exact representation of a given culture, among others. Furthermore, as well as bringing forth participants' discourses that are embedded in everyday practices, it enables the identi‐ fication of discrepancies between discourse and behaviour. For instance, HIV-positive people undergoing antiretroviral treatment may say that they are following treatment when in fact, it is observed that treatment dropouts are frequent. Therefore, knowing the practical rules that condition the behaviour of people towards HIV is highly important for the development of intervention programmes aimed at the prevention of HIV. These programmes need to be adapted to the social and cultural rules that prevail in the different social and cultural contexts of the societies in which interventions will be undertaken.
