ARTICLES

 

Health professional-patient communication and care: evaluation of an intervention for HIV/AIDS treatment adherence

 

 

Renata BellenzaniI; Maria Ines Baptistella NemesII; Vera PaivaIII

ICurso de Psicologia, Universidade Federal de Mato Grosso do Sul.  Rodovia BR 497 km 12, Cidade Universit‡ria. Parana’ba, MS, Brasil. 79500-000. renata.bellenzani@ufms.br
IIDepartamento de Medicina Preventiva, Faculdade de Medicina, Universidade de S‹o Paulo (USP)
IIIDepartamento de Psicologia Social e do Trabalho, Instituto de Psicologia, USP

 

 


ABSTRACT

Interventions to improve HIV/AIDS treatment adherence are often based on cognitive approaches of the health professional-patient communication and health behaviors. From a social-constructionist perspective of the health professional-patient communication and treatment experiences, it was assessed the implementation process of an individual psychosocial intervention, consisting of 4 encounters and informed by the conceptual frameworks of Vulnerability and Human Rights in the psychosocial dimension of Care. Taking all 16 encounters (4 encounters with each participant), the implementation process was considered "moderately developed." Difficulties were encountered to develop dialogic conversations and decode meanings regarding the lack of adherence in social situations integrated with interpersonal and sociocultural scenarios. Despite the predominance of guidelines and motivational incentives for patients, there were also dialogic moments of co-understanding difficulties in adherence in its different meanings in medication intake scenes. This approach to care proves to be productive to enhance adherence practices.

Keywords: Medication adherence. Patient care. HIV/AIDS. Communication. Evaluation.


 

 

Introduction

Patient adherence to antiretroviral therapy (ART) is crucial for HIV/AIDS1 programs worldwide. A lasting suppression of the viral load depends on it, as well as the prevention of viral resistance and failure, and the reduction of morbidity and mortality (Rasu et al., 2013), providing healthy and productive lives for people with HIV (Liau et al., 2013).

The adherence refers to how much a person's behavior corresponds to the recommendations agreed with the health professional in taking medication, following diets and/or changing the lifestyle. It is, above all, a process influenced simultaneously by many factors, requiring a multidisciplinary and continuous approach, especially in chronic diseases (WHO, 2004).

Emphasizing the health care role, adherence of individuals to the treatment stems from their everyday dealing with dynamic sets of limitations. Coping with these limitations "is built and worked out in everyday social life, that is, in many intersubjective contexts among which the relationship with the health service is preeminent because of its relevance and constancy" (Nemes, 2009, p.5).

The Brazilian AIDS Program recommends activities where adherence is managed and encouraged by the Brazilian Unified Health System (SUS), among them medical consultations and individual care by other health professionals, focused specifically on adherence to the treatment (Brasil, 2008; 2007). There had not been, however, broad evaluation studies of these activities until 2009, when an inquest in the services in the State of S‹o Paulo showed that the adherence approach is predominantly performed by doctors and nurses during regular consultations; and that the majority of other activities which involve adherence is not specific enough, besides being insufficiently protocolled and evaluated (Caraciolo et al., 2009).

 

Communicational, counselling and educational adherence interventions

Based on the review of 36 qualitative studies published between 1996 and 2005, Vervoort et al. (2007) suggest that adherence interventions explore the barriers and adherence facilitators from the patients' perspective because they act as underlying processes to the appointed factors by epidemiological studies. They also recommend that adherence interventions tackle the methods by which people manage their daily lives when taking antiretroviral. Conversations with patients must cover: the condition of "being someone who lives with HIV," as acceptance improves adherence; the maintenance or display of the secrecy over the seropositivity (opening up may both help adherence and also expose the patient to negative commentaries and discriminations); the clinical benefic answers from ART (viral load decrease, immunity improvement); and which circumstances imply forgetfulness or consciously changing the medication intake. It is recommended: offering information; asking the patients to describe their routine intake; supporting the development of abilities, especially to organize their lives, anticipate risks of failures and access the support network; developing trust in the professionals through open and frank communication. As Vervoort et al. (2007, p.27) state, "adapting medication to life rather than life to medication is the first and most important strategy to promote adherence."

Hence, it is understood that the individual adherence support activities must invest heavily in singularizing and continuous availability of moments of dialogues between health professionals and patients about their experiences with the treatment in different contexts. Different ways should be sought for the patient have a better "quality of life" and "in the way it suits him" (Nemes et al., 2012, p.281). 

Based on the five main theoretical perspectives – biomedical, behavioral, communication, cognitive, self-regulative – and the trans-theoretical model identified by Leventhal and Cameron (1987), in works about intervention in AIDS and tuberculosis adherence, the review of Munro et al. (2007) points out that the communication perspective works are based on the idea that a good provider-client communication (clear and comprehensive message, adequate content and bonding) will enhance  adherence through patient education.

Although since the late 1990s were assigned effects in adherence of certain characteristics of communication and the physician-patient interaction – the patient receiving information about the treatment, being heard and respected, being active in questioning (Roberts, Volberding, 1999) – the communication perspective is the one which has the least categorized number of works (five). Moreover, out of these, only two are review papers (Griffin et al., 2004; Lewin et al., 2001), examining communication effects on health behaviors regarding certain interventions. Therefore, few works examine the effects of communication, specifically about adherence, although communication components are used in many adherence interventions, and rarely in an explicit manner or as the main component (Munro et al., 2007).

A review of 25 adherences to antiretroviral therapy (ART) interventions, published between 1996 and December 2004, concluded that the interventions have been essentially "atheoretical" and of insufficient methodological strictness for assessing effectiveness and generalization capability (Amico, Harman, Johnson, 2006). On the other hand, 18 of those interventions included individual counseling sessions, counseling support, supportive communication or individualized patient education. Despite varying in duration and frequency, and whether associated or not to other procedures, those sessions clearly cover conversations between health professionals and patients. 

Thus, in spite of being possible to perceive the value of communication and dialogue plan of proposals of a good part of interventions, the conversations that occurred among health professionals and patients constitute a kind of "black box". There is little or no explanation on which theoretical-methodological basis they were conceived and developed. Additionally, few are the qualitative analyses if compared to the large number of experimental studies which describe more frequently the randomization, allocation and closing procedures than the communicational procedures with the participants. After all, what is understood by health professional-patient communication? What is meant by having a conversation or a dialogue?

These questions offered the opportunity for a qualitative evaluation of an individual care intervention trial to support patients to improve their adherence antiretroviral therapy, which is the object of this article – complementing other evaluations of this nature (Bellenzani, Nemes, 2013; Nemes et al. 2012; Santos, 2010). Charts 1 and 2 summarize the intervention trial and the research outline of this paper, respectively. Annex 1 contains a summary of the intervention protocol.

 

Conceptual and methodological basis of intervention

An intervention which emphasizes the psychosocial dimension of illness and Care

The evaluated intervention was thought of in the midst of the Brazilian answer to AIDS, whose propositions in the human rights framework, for instance, have been managed since the end of the 20th century. The most recent formulation of the Framework of Vulnerability and Human Rights (V&HR) for analyzing the epidemic and propose programmatic actions guided the protocol development. This framework expresses the commitment to "search for new epistemological and technical bases towards the health practices reconstruction proposals" (Ayres, Paiva, Buchalla, 2012, p.12) in the context of the Brazilian Unified Health System, materializing its principles: universality, comprehensiveness and fairness.

Distancing itself from the cognitive and behavioral guidance more frequently present in adherence interventions (Simoni et al., 2010), it was maintained the intervention planning, the notion of Care in the adherence field of chronic diseases treatment (Nemes et al., 2009). The capital letter indicates the intention in amplifying the most common meanings of patient assistance or care, considering it "as a reconstructive category" of health practices (Ayres, 2009a, p.62), being inspired by the hermeneutics of Gadamer and Habermas.

Care is defined as

[...] a category with which there is a desire to simultaneously assign a philosophical comprehension and a practical attitude facing the meaning that health actions acquire in diverse situations in which a therapeutic action is required, that is, an interaction between two or more subjects with the objective of alleviating suffering or reaching welfare, always mediated by knowledge specifically aimed at this end (Ayres, 2009a, p.42).

In the more concrete plan of health practices,

looking after someone's health is more than building an object and intervening over it. [É] Projects must be considered and built; [É] a certain relationship between spirit and matter, mind and body must be sustained [É]. Then, it is mandatory to know what project of happiness is in question when assisting [É] (Ayres, 2009c, p.37).

The production of Care in a dialogical adherence intervention presupposes "diverse, inter-linked and complex [É] changes [É] from: subject to inter-subjectivities; technical control to practical success; treating to caring" (Ayres, 2009c, p.37). Regarding the communication which constitutes Care, there is an advance from the notion of people while individual nucleus of subjectivity (in which their identities were associated to sameness/permanence) to the notion of "dialogic constitution of subjectivities", taking inspiration from Habermas (Ayres, 2009c, p.29). In the inter-subjective relationship, the subjects mutually recognize themselves and "constitute themselves one in front of the other [É] [seeking] a sharing of horizons," during the conversations which aim to produce health (Ayres, 2009c, p.35), from "the linguistic bridges between the world of techno-science and common sense" (Ayres, 2009c, p.34).

From the V&HR Framework (Ayres, Paiva, Buchalla, 2012) derives the second conceptual source: the psychosocial dimension implied in Care, linked to the social constructionist approach (Paiva, 2012a). Conceptually, the social constructionist perspectives propose

a paradigmatic change in relation to the representational or cognitive perspectives, which state in a universal and essential manner the existence of psychological realities and internal processes, such as thought, memory, attention, motivation and emotion [É] [They differ themselves from] psychological hegemonic theories [which] seek to explain, through these processes, human relationships and behavior. (Guanaes, 2006, p. 22)2

Opposing the perspective which sees the individual as a "set of intra-psychic or biological-behavioral factors," the Care which integrates the psychosocial attention of social constructionist inspiration works with "the notion of person in interaction, conceived as inter-subjectivity [É] and as subject of rights" (Paiva, 2012a, p.45). As a methodological derivation, "the subject on the scene is the most interesting door to initiate any dialogue in a psychosocial approach of Care, to deal with any of three dimensions of vulnerability on illness" (Paiva, 2012a, p.62). 

The "scene methodology in the V&HR framework" (Paiva, 2012b, p.187) incorporated to intervention was developed in the midst of the social constructionist movement – specifically, in the study fields of gender, sexuality and STD/AIDS prevention (Paiva, 2006). The health professionals who conducted it with the participants were trained and supervised on the referential of intervention, including this method, so that during the conversations they would propose the "mapping, description and decoding of scenes [specifically, those related to the treatment], and their socio-cultural contexts and scenery" (Paiva, 2012b, p.165). The Chart 3 details the incorporation of this methodology to a clinical trial. The objective was to collaborate with the people to critically reflect on their experiences with the treatment, conceiving them as "subjects of their daily lives and subjects of rights" (Paiva, 2012b, p.166-7).

Regarding the care of the person living with HIV, the conversation over scenes of taking the medication sophisticates the dialogue on the dynamics of treatment adherence, which always involves more than one prescription [É] Episodes are raised in which the medication had not been taken, which are the "easy' scenes that guaranteed taking it [...], analyzed together with each person and from different angles – from the point of view of their personal history in the service, of the present feelings in each scene, as well as the comprehension of the discrimination and social stigmatization associated with AIDS in the family and work contexts. (Paiva, 2012b, p.169)

 

New dimensions and components for evaluating a psychosocial intervention on adherence: from message transmission to dialogical communication

The references aforementioned described require the implementation of a new kind of psychosocial Care, focused on adherence problems to the HIV/AIDS treatment, which consequently depends on the flux of conversations. Therefore, it is necessary to delineate the perspective of the health professional-patients communication adopted in this evaluation.

A "good communication" on health practices is traditionally that whose emphasis is placed on the health professional competence in the use of language and in the clarity of their (informative and prescriptive) enunciations. This conception is an heir of the cognitive revolution, processed since the 50s in Psychology, intensified by changes in the scope of Science Philosophy from the 70s (çlvaro, Garrido, 2006). The prevailing paradigm of that period became known then as the information processing paradigm, in which the cognitive processes are approached through the computer metaphor in an analogy between the computational and the cognitive processes – including those which involve interpersonal communication: thinking, formulating, transmitting enunciations; receiving and processing messages – as noted by çlvaro and Garrido (2006, p.250), "the mind as a system of data processing."

This cognitive apprehension of communication was supported in the "old knowledge paradigm" in crisis in the Philosophy of Science, being progressively substituted by "new knowledge paradigms" (Pearce, 1996, p.181), among others, the social constructionism paradigm. Communication in the "old paradigm" supposed

that language referred itself to the world, that is, that language is representational: it tells us about the things which are 'there, outside'. [...] It establishes that the transmission of a message (that is, managing that messages go from 'here' to  'there') is the key function of communication. (Pearce, 1996, p.176)

From that paradigm it is easy to understand, for example, one of the criticisms directed towards the communicational perspective in strategies of adherence improvement: ignore the attitudes, the motivational and inter-personal factors that interfere in the reception of the message and in its conversion into behavioral change by the patient (Munro et al., 2007). Hence, the processes are individually operated by the speakers (in their minds as computers). The health professional "thinks," formulates and transmits enunciations, while the patient assimilates, processes the messages received, converting them into behaviors. "Negative" characteristics of the patient or "bad quality of the message" transmitted may interfere in the processing and conversion into behavioral "answers" by the patient.

Moving away from the cognitive perspective, the way in which communication was analyzed in the present paper was guided by the philosophical hermeneutic epistemology and social constructionism (Schwandt, 2006). These led the way of conceiving the health professional-patient communication, and they guided "how" to listen to the audios and to read the transcripts of the dialogues in the evaluation process of implementation as well. Based on Gadamer, "comprehension is the interpretation [É]; in the act of interpreting [É] the traditions and the concomitant pre-judgments which influence our efforts to understand, [are] conditioning our interpretations [É]; the comprehension is participative, conversational and dialogical [É], being conquered only through some logic of question and answer [É]" (Schwandt, 2006, p.198-9).

The hermeneutic tradition and the social constructionism value the comprehension of meanings produced in the conversational processes, being concerned about "clarifying the conditions under which comprehension occurs" (Schwandt, 2006, p.200). Although disagreeing on the question of truths to be interpreted either existing or not a priori, both share "the general critic of meaning while object", of meanings "as fixed entities which can be discovered and whose existence does not depend on the interpreter", and both have "affinity with the notion of the birth of meaning" (Schwandt, 2006, p.202). Namely, "meaning and understanding are built socially [É], we do not reach or own [them] until we perform a communicative action [É]" (Anderson, Goolishian, 1998, p.36).

In the psychosocial approach of Care proposed in the intervention – and in this evaluation – communication is thought of as mutual comprehensions produced by meanings exchange – that is, "in between" the speakers. Both in the health professional-patient interaction and in the person cared by "those" he/she interacts with and communicates with, performatively and intersubjectively, in his/her everyday scenes. Therefore, they are not about "the existing meanings inside each other, a priori", to be transmitted and assimilated, but about the meanings built and shared in the health professional-patient meeting scene.

In order to evaluate the conversations for investigating whether they materialized the protocol of the proposed psychosocial approach proposed for the intervention, it was necessary to adopt the notion that not all conversations are, necessarily, of a dialogical nature. They may also be of a monological nature, as named by Guanaes (2006), based on the interfaces of theoretical propositions by John Shotter, Mikhail Bakhtin and Harlene Anderson.

Dialogical conversations make possible multiplicity of voices, as opposed to monological, in which one voice, perspective, tradition or dominant speech is imposed (for instance, the technical-scientific, medical, religious, psychological speeches, etc). Dialogues allow for exchanges, complementation, interactions between the voices and, meanwhile, the emerging of innovation and new meanings "from the recognition of the other as a distinct and individual voice," thus creating possibilities of group construction of 'change'" (Guanaes, 2006, p.73).

Thus, from this theoretical and methodological perspectives it was originated a dynamic evaluative approach (as illustrated on Figure 1 and described on Chart 4), systemized in interdependent components and dimensions, corresponding to more "panoramic" or more "internal" approaches (like a "zoom").

 

Opening the "black box"

The comparative findings of the cases will be described in the charts 5 to 9, using fictitious names. We recommend viewing the charts before the Discussion. As a way of complementary information, there is on Chart 5 clinical data and adherence measures from the participants. Chart 6 corresponds to objective "b" from the Introduction, referring to who the patients are and what they said about their experiences involving the treatment4. On charts 7 and 8 (corresponding to objectives "a" and "b"), the first to the fourth encounters are analyzed (longitudinal synthesis, reproducing parts), according to dimensions and components, deepening the production of meanings during the conversations. 

From the exhausting qualitative analysis broken down on charts 6 to 8, an objective analysis was made of the development of intervention in the four cases, using an Evaluative Table, which contemplates a scale of pre-established patterns (Chart 9). 

 

Discussion

In the group of cases, the intervention was "moderately" developed. The intended inflection intended saw "deconstruction" of the more traditional model of approach concerning adherence problems. It was preliminary, more "essay-like", not operating in the four cases. Variations in the process implied better development either of some components or from one dimension to another. The implementation with Dirce ("the last ones"), closest to the original bases, suggests a progressive improvement in relation to Ciro and Amaro ("the first ones").

It is worth highlighting two implementation fragilities which are common to the cases: 1) as a whole, the dialogical conversations were not predominant, although there have been some encounters, or moments, more dialogical than others; 2) developing dialogical dialogues in all encounters was difficult, especially sustained in the original theoretical-methodological references: V&HR framework and scenes methodology.

Motivate and train or dialogue?

In a more immediate apprehension, the identified conversational difficulties are rooted in the interaction themselves, regarding the social interactions of "physician/health professional" and "patient", in which, historically, "the final word" belongs to the former. The latter tells "what the problem is," listens to diagnoses and prescriptions, "assimilates them" and behaves according to what is recommended - asking for clarification, at the most. It is uncommon the understanding that patients and health professionals always need to have a dialogue, especially beyond biomedical aspects. In fact, more common is exactly the absence of time in the consultations, making it even more difficult to extend the dialogue. How to expect, then, that in this intervention, conducted in the health service environment, the patients would talk spontaneously? Additionally, how to expect that the patients would talk "about life, not only about medications"? They commented that this was uncommon in the medical consultations. 

Despite these general difficulties, the implementation was close to the general principles, besides having repercussions in the self-care and well-being, according to the participants. It can be highlighted the "permission", inter-subjectively built for the emergence of narratives about problems, failures, difficulties and mistakes in the treatment, produced in the conversation, in the four cases. If the health professional were normative, possibly the fear of reprehension would make it impossible to assume them - as it normally occurs in medical consultations, according to the patients.

Thus, the intended inflection was partially processed. In some measure, it was jeopardized by the loss of dialogism in key moments/subjects, changed for the more directive communicational style, the "checklist", or by the "excessively motivational" bias. For example, in çlvaro's case, although Vera was open to the dialogue, she slipped back to instructions and incentives by facing a more laconic interlocutor.

Generally, the conversations mixed characteristics of cognitive-behavioral guidance (change beliefs, train, motivate, increase sense of auto-efficiency) with characteristics closer to social constructionist perspectives.

The conversations tended to a "more constructionist" dialogic when, for example, the health professional made open questions, demonstrating the intention of better understanding; when she commented on what the person felt or did, not as "intrinsic" or "permanent" characteristics, but understanding them as conditioned to the interpersonal situation and context; when she recognized that there were "many ways of following the treatment," or "many possible solutions;" or when she mentioned that, together, they would "find the solution which would make more sense to the person." Engagements in this manner suggest that there has been some degree of "dynamics in the communication processes and [of] centrality of other-me interaction in the production of meanings" (Guanaes, 2006, p.30).

On the other hand, the more monological the conversation, the more predominated the closed questions ("are you doing it correctly?"), which investigated the frequency of practices, or which had "enclosed" expectations of answers; or, still, repetitive technical explanations, incentives, tips and instructions in the imperative ("you have to do this!") which interrupted the continuity in the patient's speech. It was thus produced a communicational dynamics which restricted the new voices, that is, of clarifying meanings according to other comprehensive perspectives, broader than those at individual level.

As for the rest, the general theme of the dialogue – the treatment of an incurable disease, whose risk of death by treatment failure is well-known – may have 'incited' these more monological engagements: "insisting on doing the right thing," "repeating as many times as necessary," "checking if the prescription is being followed," and always "in the name of the person's well-being."

Additionally, the conversations took place in the research context, institutionally validated. Possibly, the symbolism of science as a controlled and patterned activity was present, inter-subjectively, in the care interactions, implying some loss of naturalism and spontaneity, and the sharing of a certain kind of "pressure": the health professionals "executed well" the expected; and the patients "enjoyed the opportunity of the research from USP."

Therefore, the communicational difficulties identified are partially sustained in theoretical-conceptual and historical-cultural issues which extrapolate the "here and now" of the encounters. Deepening them would required more space for dialoguing with other productions which discuss: verbal interactions and dialogism in health practices (Corra, Ribeiro, 2012); social meaning of AIDS, living with HIV, being a health professional in the AIDS service in Brazil; "prescriptive and normative" tradition "of guiding and motivating", "embodied" in the professional practices in health; or yet, about the psychological trends predominating in the professional education of psychologists and in health courses. These, still, are poorly inured to the more contemporary referential, such as the social and hermeneutic constructionism which emphasizes care as dialogical interaction.

Lastly, but of no less importance, there are the implications related to the patients' own situations, which are being investigated in a different work for deserving further analysis. Individual situations involving complex social dimensions are of a difficult mitigation for the healthcare level. Thus, they challenge the "how to talk" about some many serious, synergistic and multi-dimensional aspects.

 

Dialoguing in the Vulnerability and Human Rights Framework is a challenge

In many moments, the conversations overvalue the "memory problems" and the "practical solutions," such as "remembering to take the medication" when packing for travelling (Ciro); and "forgetting to buy the pill box" (Amaro).

Incentives and strategies to facilitate the medication intake are not problematic conversational resources themselves. Nevertheless, as they overlap decoding by the dialogue on psychosocial and symbolic "barriers" – which interact in the production of failures (meanings which they acquire in each scene, the act or taking the dosage or not) –, such incentives may be innocuous. That happens due to the health professional rhetoric does not connect to the action meanings which the patient is narrating. For example, Ciro explained that not taking the medications on his trips was a decision related to not having to give explanations to his friends on the type of treatment he was undergoing, rather than occurring because he had forgotten to take the medication with him while traveling. With respect to Amaro, the dialogues about the many meanings between taking the medications at home or at work were incipient. The co-understanding was that he did not use the pill box because he had forgotten to buy it. On his turn, irrational meanings – insecurity, fear of exposing himself and suffering discrimination – were not explored. What is the meaning of avoiding the use of the utensil at work? Would the identity of the worker be threatened for being recognized as someone who "takes medication every day"? What would his colleagues "suspect of"?

These examples suggest that, besides being scarcely used in the health area and more challenging, the dialogical conversations had one added difficulty: developing them according to the Vulnerability and Human Rights Framework and the methodology of scenes.

In conversations with patients, it was difficult approaching to individual aspects of vulnerability to illness for lack of adherence to the treatment, while inter-subjectively produced personal experiences, in different contexts. In other words, the beliefs, the behaviors, the degrees of motivation, self-sufficiency and information were not sufficiently worked on in terms of their situational meanings. Hence, individual components of vulnerability were not approached enough as inextricably integrated to the programmatic and socio-cultural components (Paiva, 2012a). That converged for the prevalence of an approach closer to the behavioral and cognitive trends, rather than to the psychosocial-constructionist trends.

The methodological resource of scenes, more innovative to help the dialogue supported by adopted references, was present, but not without considerable management difficulties. As the most important aspect, its incorporation was partially discordant of these references, mainly used as a "training" resource for cognitive-behavioral learning than for extending the dialogue.

The conversations did not extend the decoding of each person's scenes until the comprehension of programmatic and social scenarios involved. Most of the times, they extrapolated a little the cognitive-behavioral level – regarding what "the person thought and did in each scene," and what could be learnt, memorized or remembered. The simplified handling of the exploration and decoding of meanings in the scenes/scenarios implied a loss to the psychosocial-constructionist approach of intervention. A clear indicative is that the AIDS stigma has not been decoded and problematized in its expression at a personal level: "the fear of prejudice" which reverberated in not taking medications in certain social situations – trips with friends (Ciro); at work (Amaro); or even at home (Deise hid the bottles when her son had friends over). Psychosocial experiences were reduced, in conversation terms, to an "already overcome" belief, which did not correspond to the meanings of Amaro's narrative or to one "denial/resistance" – meaning suggested when Deise was asked: "Haven't you ever accepted the diagnostics, ever accepted the fact that you are seropositive?" "No. No. [É]" "In fact, it is how much prejudice you have, right? [...]"

As the psychosocial constructionist emphasis was anchored on the dialogical conversations and on the V&HR Framework, this became less prominent, especially with Ciro and Amaro. There was a better welcoming with Deise and çlvaro while a necessary process to the inflection towards this approach, but that does not configure it in itself. Furthermore, the conversation was more dialogical with Deise, as she engaged in the conversations, and Vera was also responsive concerning other issues of Deise, such as anger and non-acceptance of her seropositivity, her "tiredness over work," "her depression," and her plans after resigning.

The scene methodology went also better with Deise, in contrast to what happened with çlvaro, who practically did not use it. Even so, the disposition to dialogue with çlvaro seemed better if compared to Amaro and Ciro, and Vera's positioning tended to extrapolate, a little more, the cognitive-behavioral level, characterizing a direction towards a psychosocial approach and an implementation similar to counseling. The dialogue thematic limits were extended and Vera made an effort to help çlvaro to "insert" the treatment in the problems experienced, although he did not seem mobilized enough, as if the treatment was secondary to his concerns. Favorably, she used metaphorical resources - his life as a "cake"; the problems/issues as "slices of cake" -, proposing that he reflected on how they impacted the treatment. Asked about what could be done, he answered: "look after myself." He was encouraged to be more independent and have more initiative in his decisions and attitudes in situations that afflicted him and harmed self-care - for example, to be sad, "listless" and "dependent" on his boyfriend. So, a movement was produced. Alvaro intended to have "a serious conversation" with his boyfriend. In his project of happiness, inextricably linked to the search for health, his relationship with his boyfriend was very important.     

Even facing obstacles, the effort to apply the scene methodology contributed to enhance the exploratory dialogue about their experiences, instead of checking habitual practices or, rashly, indiscriminately giving out prescriptions and guidance. In most part of the conversation, it was accessed the "how I live with HIV" and ""how I follow the treatment," rather than "what I have to say." With Ciro, the situation was very illustrative: in many moments there was a doubt if "he needed intervention," because he assured he followed the treatment "to the letter," denying any difficulties. Initially, it was considered that the dynamic of "doing an interview" had influenced his behavior as a "good patient." Notwithstanding, his clinical data accessed at the end of the analysis suggested that the viral replication was kept relatively low, although constant, both a year before and a year after the trial. On the other hand, contrary to the "expected," his adherence was above 95% before, during and after intervention.

Clinically, Ciro's case seems compatible with the long time having the illness, despite deserving medical evaluation over the possibility of failure. çlvaro's and Deise's exams – pre- and post-intervention – show a typical pattern of insufficient adherence, which, evidently, would demand an accurate investigation of adherence and, if necessary, genotyping. In these three cases, the possible individual benefits of intervention did not reach high technical success in the clinical-laboratorial situation. Had the research protocol not demanded the isolation of intervention in the work, the situation would have probably been different. Vera would have known the lab data and, at least, would have talked with the responsible physicians, as she would be provided with further knowledge about the adherence situation of each one. In Amaro's case, the intervention, from the clinical-laboratorial point of view, may have only helped or encouraged him to keep his adaptation process from the beginning of the treatment, which, although easier from the clinical point of view, is a period considered classically difficult and crucial for adherence.

 

Conclusion

This work illustrated how modalities of individual interventions concerning adherence care may be structured and protocolled to facilitate its dissemination and incorporation to the Brazilian Unified Health System (SUS). For that, the modalities of care must be faithfully implemented to the theoretical-methodological references planned, which in this study did not occur fully. This was made more difficult, in part, by the general characteristics of a clinic trial and by the research context.

The trainings, supervisions and the intervention script were not sufficient to guarantee loyalty, or to fully promote the intended inflections in the direction of a dialogical communicational process, less "cognitive," supported by the referential of the V&HR and the psychosocial dimension of Care. It remains a challenge to develop pedagogical and conversational resources that can help the "weaving" of psychic level with the interpersonal and the socio-cultural in the intelligibility of adherence problems. 

The scripts, specifically, have such aim, but not without the risk of "adverse effects" – homogenizing or mechanizing the conversations, losing in dialogism. After all, are they reconciled interventions structured with social constructionist proposals, such as "developing a free conversational space"? (Anderson, Goolishian, 1998, p.37).

The protocols/scripts of this research are open and not very directive; it does not advocate models of questions or a sequence of subjects. They showed themselves to be very satisfactory, confirming Santos' findings (2010), except when regarding the fourth encounter. The objectives were relevant; nevertheless, they were transformed into abstract or closed generic questions, which almost did not incorporate specificities talked about on previous encounters, thus harming the continuity of the dialogues.

The results, even though partial, suggest that they are compatible – social-constructionist perspectives and structured interventions – as long as the implementation is made more flexible, allowing for innovations in the process that retro-feeds the protocol/script, including in differentiated versions, sensitive to the diversity of the users' profile, health professionals and places of implementation. Its use should not restrict the dialogues; quite the opposite, it should extend them, even beyond individual assistance – in the interlocutory interaction between the health professional conducting it and the multi-professional team. For the complete/integral Care, it is essential that non-medical health professionals, conducting communicational interventions on adherence, act in a team and, above all, in coordination with the medical professionals, incorporating to the dialogues with the patients their clinical-laboratorial data regularly monitored.

The evaluation of the three professionals points toward the need for the following changes regarding the future implementation of this intervention in the United Health System (SUS): the number of encounters and their duration must be flexible; and the trainings must improve the "communication issue" and the challenge of transiting between "a discussion more focused on adherence and the wider approach of issues brought by the patients about their daily lives" which are not directly related to the treatment (Santos, p. 53). Nevertheless, depending on the conceptions over adherence and the interventions referential, the defining criteria "that goes beyond" the script may vary enormously. The analysis of what is "directly related" to adherence must not be based only on "classic" risk factors, otherwise many subjects will be left without being heard and answered to. 

Concluding, the health professionals will have to continuously deal with the tension "not follow the script, stick to the script." "Not following" means to accept the user's invitation to have a dialogue about a given issue, "sticking to the script" with new elements which broaden the understanding of daily difficulties in following the treatment; and indicate convenient and possible changes. The potential of the  dialogical communication to clarify the (always singular) connections between the "life issues" and the (non) adherence – associated to the therapeutic value of being listened to and welcomed – will contribute to the mitigation of vulnerability to illness, besides the suffering and violations of rights.

 

Collaborators

The first author completed the analysis and the writing of the first version of the paper. The second and third authors strongly contributed to the final version, in addition to the coordination of the original research, formulation and training in the scene methodology, respectively.

 

References

ÁLVARO, J.L.; GARRIDO, A. Psicologia social: perspectivas psicológicas e sociológicas. São Paulo: McGraw-Hill, 2006.         

AMICO, K.R.; HARMAN, J.J.; JOHNSON, B.T. Efficacy of antiretroviral therapy adherence interventions: a research synthesis of trials, 1996 to 2004. J. Acquir. Immune Defic. Syndr., v.41, n.3, p.285-97, 2006.         

ANDERSON, H.; GOOLISHIAN, H. O cliente é o especialista: a abordagem terapêutica do não-saber. In: McNAMEE, S.; GERGEN, K. (Orgs.). A terapia como construção social. Porto Alegre: Artes Médicas, 1998. p.34-50.         

AYRES, J.R.C.M. Cuidado e reconstrução das práticas de Saúde. In: ______. (Org.). Cuidado: trabalho e interação nas práticas de saúde. Rio de Janeiro: Cepesc; UERJ/IMS; Abrasco, 2009a. p.41-73. (Clássicos para integralidade em saúde).           

______. Para compreender o sentido prático das ações de saúde: contribuições da hermenêutica filosófica. In: ______. (Org.). Cuidado: trabalho e interação nas práticas de saúde. Rio de Janeiro: Cepesc; UERJ/IMS; Abrasco, 2009b. p.129-55. (Clássicos para integralidade em saúde).         

______. Sujeito, intersubjetividade e práticas de saúde. In: ______. (Org.). Cuidado: trabalho e interação nas práticas de saúde. Rio de Janeiro: Cepesc; UERJ/IMS; Abrasco, 2009c. p.17-39. (Clássicos para integralidade em saúde).         

______. O cuidado, os modos de ser (do) humano e as práticas de saúde. In: ______. (Org.). Cuidado: trabalho e interação nas práticas de saúde. Rio de Janeiro: Cepesc; UERJ/IMS; Abrasco, 2009d. p.75-105. (Clássicos para integralidade em saúde).           

AYRES, J.R.C.M.; PAIVA, V.; BUCHALLA, C.M. Direitos Humanos e vulnerabilidade na prevenção e promoção da saúde: uma introdução. In: PAIVA, V.; AYRES, J.R.C.M.; BUCHALLA, C.M. (Orgs.). Vulnerabilidade e Direitos Humanos: prevenção e promoção da saúde. Livro I. Curitiba: Juruá Editora, 2012. p.9-22.         

BASSO, C.R. et al. Exploring ART intake scenes in a human rights-based intervention to improve adherence: a randomized controlled trial. AIDS Behav., v.17, n.1, p.181-92, 2012.         

BELLENZANI, R.; NEMES, M.I.B. Avaliação de uma intervenção psicossocial no cuidado em adesão ao tratamento por HIV/Aids: um estudo de caso. Temas Psicol., v.21, n.3, 2013. (no prelo).         

BRASIL. Secretaria de Vigilância em Saúde. Programa Nacional de DST e Aids. Diretrizes para o fortalecimento das ações de adesão ao tratamento para pessoas que vivem com HIV e aids. Brasília: MS, 2007. Disponível em: <http://bvsms.saude.gov.br/bvs/publicacoes/diretrizes_tratamento_aids.pdf>. Acesso em: 20 jun. 2013.           

______. Ministério da Saúde. Secretaria de Vigilância em Saúde. Programa Nacional de DST e Aids. Manual de adesão ao tratamento para pessoas vivendo com HIV e Aids. Brasília: MS, 2008. (Série A, Normas e Manuais Técnicos). (Série Manuais, n.84).         

CARACIOLO, J.M.M. et al. Atividades para melhoria da adesão à TARV em serviços de saúde do SUS no estado de São Paulo, 2007. Saude Soc., v.18, supl.2, 2009.   Disponível em: <http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104 -12902009000600013&lng=pt&nrm=iso>. Acesso em: 18 nov. 2013.           

CORRÊA, G.T.; RIBEIRO, V.M.B. Dialogando com Bakhtin: algumas contribuições para a compreensão das interações verbais no campo da saúde. Interface (Botucatu), v.16, n.41, p.331-42, 2012.         

GRIFFIN, S.J. et al. Effect on health-related outcomes of interventions to alter the interaction between patients and practitioners: a systematic review of trials. Ann. Fam. Med., v.2, n.6, p.595-608, 2004.         

GUANAES, C. A construção da mudança em Terapia de Grupo: um enfoque construcionista social. São Paulo: Vetor, 2006.         

ÍÑIGUEZ, L. Construcionismo social e psicologia social. In: MARTINS, J.B.; EL HAMMOUTI, N.D.; ÍÑIGUEZ, L. (Orgs.). Temas em análise institucional e em construcionismo social. São Carlos: RiMa, 2002. p.127-56.         

LEVENTHAL, H.; CAMERON, L. Behavioral theories and the problem of compliance. Patient Educ. Couns., v.10, p.117-38, 1987.         

LEWIN, S.A. et al. Interventions for providers to promote a patient-centered approach in clinical consultations. Cochrane Database Syst Rev., v.4, 2001. Disponível em: <http://www.ncbi.nlm.nih.gov/pubmed/11687181>. Acesso em: 17 set. 2013.         

LIAU, A. et al. Interventions to promote linkage to and utilization of HIV medical care among HIV-diagnosed persons: a qualitative systematic review, 1996-2011. AIDS Behav., v.17, n.6, p.1941-62, 2013.         

MUNRO, S. et al. A review of health behavior theories: how useful are these for developing interventions to promote long-term medication adherence for TB and HIV/AIDS? BMC Public Health, v.7, p.104, 2007. Disponível em: <http://www.biomedcentral.com/1471-2458/7/104>. Acesso em: 17 set. 2013.         

NEMES, M.I.B. Desenvolvimento da Linha de pesquisa Qualiaids. 2009. Tese (Livre Docência) - Faculdade de Medicina, Universidade de São Paulo, São Paulo. 2009.         

NEMES, M.I.B. et al. Intervenção para melhoria da adesão ao tratamento da aids com base na perspectiva construcionista e na noção de cuidado: lições aprendidas com a experiência das profissionais. In: PAIVA, V.; AYRES, J.R.C.M.; BUCHALLA, C.M. (Orgs.). Vulnerabilidade e Direitos Humanos: prevenção e promoção da Saúde. Livro II. Curitiba: Juruá Editora, 2012. p.275-308.         

______. Assessing patient adherence to chronic diseases treatment: differentiating between epidemiological and clinical approaches. Cad. Saude Publica, v.25, supl.3, p.S392-S400, 2009.         

ORGANIZACIÓN MUNDIAL DE LA SALUD. Adherencia a los tratamientos a largo plazo: pruebas para la acción. Ginebra: OMS, 2004.         

PAIVA, V. Dimensão psicossocial do cuidado. In: PAIVA, V.; AYRES, J.R.C.M.; BUCHALLA, C.M. (Orgs.). Vulnerabilidade e Direitos Humanos: prevenção e promoção da Saúde. Livro II. Curitiba: Juruá Editora, 2012a. p.41-72.         

______. Cenas da vida cotidiana: metodologia para compreender e reduzir a vulnerabilidade na perspectiva dos direitos humanos. In: PAIVA, V.; AYRES, J.R.C.M.; BUCHALLA, C.M. (Orgs.). Vulnerabilidade e Direitos Humanos: prevenção e promoção da Saúde. Livro I. Curitiba: Juruá Editora, 2012b. p.165-208.         

PAIVA, V. Analisando cenas e sexualidades: a promoção da saúde na perspectiva dos direitos humanos. In: CÁCERES, C.F. et al. (Orgs.). Sexualidad, estigma y derechos humanos: desafíos para el acceso a la salud en América Latina. Lima: FASPA/UPCH, 2006. p.23-51.         

PEARCE, W.B. Novos modelos e metáforas comunicacionais: a passagem da teoria às práticas, do objetivismo ao construcionismo social e da representação à reflexividade. In: SCHNITMAN, D.F. (Org.). Novos paradigmas, cultura e subjetividade. Porto Alegre: Artes Médicas, 1996. p.191-203.         

RASU, R.S. et al. Cost of behavioral interventions utilizing electronic drug monitoring for antiretroviral therapy adherence. J. Acquir. Immune Defic. Syndr., v.63, n.1, p.e1-8, 2013.         

ROBERTS, K.J.; VOLBERDING, P. Adherence communication: a qualitative analysis of physicianpatient dialogue. AIDS, v.13, n.13, p.1771-8, 1999.         

SANTOS, M.A. Análise crítica de uma intervenção para melhoria da adesão do paciente vivendo com AIDS à terapia antirretroviral. 2010. Dissertação (Mestrado) - Instituto de Psicologia, Universidade de São Paulo, São Paulo. 2010.         

SCHWANDT, T. Três posturas epistemológicas: interpretativismo, hermenêutica e construcionismo social. In: DENZIN, N.K.; LINCOLN, Y. (Orgs.). Planejamento da pesquisa qualitativa: teorias e abordagens. Porto Alegre: Artmed, 2006. p.193-217.         

SIMONI, J.M. et al. Antiretroviral adherence interventions: translating research findings to the real world clinic. Curr. HIV/AIDS Rep., v.7, n.1, p.44-51, 2010.         

VERVOORT, S.C. et al. Adherence in antiretroviral therapy: a review of qualitative studies. AIDS, v.21, n.3, p.271-81, 2007.         

 

 

1 We have adopted the suggestion of the National Department of STD/AIDS/Hepatitis, Ministry of Health, of spelling "aids" as a common noun, in lowercase, except for "HIV/AIDS", proper nouns and direct citations.
2 The social constructionist perspective, framework or field - named, sometimes, in the plural – is heterogeneous, plural and under transformation. Some basic postulates of the social constructionism have been most shared (not always with the same emphasis on each one) by a group of authors considered constructionists (see Iñiguez, 2002). Epistemological proposals of social constructionism in Human and Social Sciences have been incorporated by Psychology, especially by Social Psychology, since the 80s (one of the main references is Kenneth J. Gergen) and, more recently, in the Psychology of Health, specifically in the Social Psychology in Health in which Mary Jane Spink is one of the references. However, it would extrapolate the limited space of this paper to evoke this extensive field to situate, in dialogue, one of the constructionist perspectives of social Psychology in health – which "thinks the health-illness process in the V&HRs Framework (Vulnerability and Human Rights)" (Paiva 2012a, p.46). We identify convergent points with other Brazilian and international constructionist perspectives, which also deserved to be explored on treating such subjects as communication, conversation, dialogism, production and negotiation of meanings in the individual, group, family, institutional and community psychosocial and psychotherapeutic practices. Furthermore, it also deserved attention the notion of social construction of the self, central to the debate of practices of psychological care. Therefore, we have opted for referring the reading of some of these authors: Marilene Grandesso, Carla Guanaes, Emerson Rasera, Marisa Japur, Sheila McNamee, Harold Goolishian, Tom Andersen, Harlene Anderson and Lynn Hoffman. The limited space demands us to focus on the references which supported more directly the planning of intervention and were incorporated to the training and supervision with the health professionals who conducted them. The constructionist perspective which supports the psychosocial dimension of Care, used in this study, is more strongly inspired by the pedagogic constructionist tradition of Paulo Freire, as well as by George Mead, Jerome Bruner, Erving Goffman, Thomas Luckmann and Peter Berger, in addition to the dramaturgical social constructionist approaches that maintains a dialogue with the production in the field of sexuality and gender, by John Gagnon, Richard Parker and Peter Aggleton.
3 The expression scene conversations cannot be found in previous publications above mentioned about scenes methodology. During this study, it seemed appropriate to name the conversation which asks for scene narratives and analyzes them.
4 As the clinical trial did not allow health professionals to access either hospital notes or adherence measures collected, all this information had exclusively the patients themselves as the source. The first author, who did not participate in the field research, had access to the clinical data only at the end of the qualitative analysis.

 

 

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UNESP Botucatu - SP - Brazil
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