Impacts of health of users with HIV/AIDS in a specialized service

Rev Bras Enferm. 2019;72(6):1571-9. http://dx.doi.org/10.1590/0034-7167-2018-0649 ABSTRACT Objective: to understand the perception of users of a Specialized Care Service (SAEServiço de Assistência Especializada) in HIV/AIDS about their oral health. Method: qualitative research that used the techniques of participant observation and focal group. For the analysis of the material produced, categories of analysis, construction of dialogical map and identification of linguistic repertoires were used. Results: impacts arising from oral health problems such as: inability to eat properly, feeling ashamed due to tooth loss, inability to perform physical exercises and, as the main barrier to access to dental treatment, fear of exposure to practices of discrimination and prejudice. Final considerations: we need the implementation of policies of Permanent Education to all professionals involved in the care for this population, to ensure users’ rights, ensure qualified care, and create security and trust relationships with individuals living with HIV/ AIDS, in access to services. Descriptors: Oral Health; HIV Seropositivity; Quality of Life; Qualitative Research; Health Services.


INTRODUCTION
AIDS remains a serious health condition. In Latin America and the Caribbean, despite the downward trend in the number of new HIV infections, approximately 120,000 new cases are diagnosed each year (1) . In Brazil, many investments have been made to transform into universal access to specialized services, diagnosis and treatment, demonstrating that it is possible for the state to pay adequate attention to those who need it (2) . With the increase in the life expectancy of people living with HIV/AIDS, it becomes relevant to study the potential obstacles they face in order to maintain their quality of life (3) . However, it should be considered that health and quality of life are multidimensional concepts that can include both objective measures of disease severity, as well as the individuals' perception of their autonomy and subjectivity (4)(5) . There is a consensus that oral problems impact on quality of life and that, therefore, the relationship between oral health and quality of life is determined by a variety of conditions that involve the individual's perception, values and limitations found in performing daily activities (6)(7)(8)(9)(10) .
The World Health Organization defines quality of life as: individual perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is, of course, determined by physical health, psychological state, level of independence, social relationships, environmental factors and personal beliefs (p.354) (11) .
Many instruments have been used to assess the impact of oral health on quality of life. Of these, the Oral Health Impact Profile (OHIP) questionnaire, in its reduced version OHIP-14 was created with the purpose of assimilating the quality of life related to oral health and used in several studies in dentistry (7,8,(12)(13)(14) . In order to know the impact of oral problems on the quality of life of HIV/AIDS patients, from the field of quantitative methods, it is commonly sought to establish cause and effect relationships with the use of instruments such as OHIP-14, which mainly measure the negative impacts (7)(8)(9) . Nonetheless, evidence from the social sciences shows that this type of approach does not allow for a deepening of the variety of feelings generated by the subjects, also requiring qualitative studies to investigate the quality of life in the various aspects of living with HIV/AIDS, including also the positive aspects (3,(15)(16)(17)(18)(19)(20) .
In this way, it was problematized how people living with HIV/ AIDS understand the impacts of oral health in their life. These people are presumed to relate HIV/AIDS infection to impacts related to their oral health, which interfere with their quality of life. The qualitative approach adopted in this study differentiates itself by prioritizing the speech of people with HIV/AIDS, which makes it possible to make individuals' perceptions of the impact of oral health on their social relations, autonomy in the performance of daily activities and the means of coping with this condition of life.

OBJECTIVE
To understand the perception of users of a Specialized Care Service (SAE-Serviço de Assistência Especializada) in HIV/AIDS about their oral health.

Ethical aspects
This research was approved by the Research Ethics Committee of the Centro Universitário CESMAC, recognized by the National Commission for Ethics in Research, the National Health Board (CONEP-NHB) and complies with the guidelines and standards set forth in NHB Resolution 466/2012. All participants signed the Free and Informed Consent Term and, to protect their anonymity, their names were replaced by alphanumeric codes.

Theoretical-methodological framework and type of study
This research used a qualitative methodology, using the techniques of Participant Observation and the Focus Group, and the analytical framework of Discursive Practices (21)(22) .

Study setting
The research was conducted by a Specialized Care Service in HIV/AIDS located in a capital in the Northeast region of the country. This service is intended for people living with HIV/AIDS and offers: guidance and psychological support, consultations in infectology, gynecology, pediatrics and dentistry; control and distribution of antiretrovirals; conducting monitoring exams; distribution of prevention inputs; educational activities for treatment compliance and for prevention and control of sexually transmitted infections and AIDS. In addition to the assistance practices, being characterized as a school service, this SAE incorporates in its daily practices of research, teaching and university extension.

Data source
Non-probabilistic sampling was used for convenience, and it was used as a criterion to participate in the study: to be a user of a Specialized Care Service and to be diagnosed with HIV/AIDS. It was identified that the days with the highest flow of users in this service were those who had medical care with scheduled demand. In general, this user, who was previously scheduled for medical care, was in full shift (morning or afternoon) in the SAE and, thus, associated the consultation with other activities, such as participation in health groups. Thus, for two weeks, being two days in each of those weeks -the days with scheduled demand for the medical professional -, the users who waited in the waiting room for the medical attention were invited to participate in a focus group for research purposes, being communicated to them the date and time that were previously defined. On the day established for the focus group, the users, while waiting in the waiting room of the SAE, were again invited to participate in the research. 10 users accepted to participate and presented on the date and time of the focus group, being: 4 women and 6 men, aged between 40 and 66 years. Regarding the time of infection, 7 participants were more than 10 years old, 4 of them over 20 years old. Only 3 users had up to 2 years of infection. To ensure the adequate number of participants, in this study, data saturation was also considered. Impacts of health of users with HIV/AIDS in a specialized service Jucá MACL, Silva LB, Silva IAP, Queiroga DEU, Carvalho AMAL, Ferreira SMS.

Data collection
Participant observation included periodic visits by the main investigator to SAE between June 2015 and July 2016. The visits allowed the main investigator to perform: conversations with health professionals about the work processes and assistance in SAE; dialogues with users and family members while waiting for service on the use of the service and the care offered to them; in addition to participating in some on-site health groups that were offered to users. This made it possible to get to know the daily life of the service and the provision of care for users, involvement with people living with HIV/AIDS assisted in the SAE as well as with health professionals, and contact with the values shared among these subjects (22) . After each visit, the experiences were recorded in a field diary. This period favored the approach of the researcher with the field, allowed to pool different reflexivities and assisted in the choice of the technique for producing the information. Notes made during this process served to subsidize the analysis procedures.
For the production of information, the focal group technique was used, because it is a space that privileges the dialogue, allows sharing experiences and coproducing meanings (22) . The group was coordinated by two researchers; took place in July of 2016, with an approximate duration of 100 minutes, recorded in audio and guided by a script created from the inspiration in themes about quality of life present in the OHIP-14. The themes were adapted to pictures depicting the following scenes: feeling ashamed; shame of laughing at pubic; withdrawal from social life; insomnia; pain when eating food; mouth pains; difficulty speaking some words; limitation of physical capacity; limitation for chores; concern and sadness; and taste of the food. Figures were used to make conversations and the conduction of the focal group easier.
The size of the group, with 10 participants, allowed the coordinators the conduction process, favoring the speech of all participants and ensuring the registrations (22) . Although the focus of the conversations in the group was on oral health and its implications on quality of life, the coordinators remained attentive to other issues that arose during the discussion. This flexibility allowed the dialogue of several themes inherent in the daily life of living with HIV/AIDS.

Organization and analysis of data
The audios recorded during the focus group were fully transcribed, a strategy that allows to identify the distribution and the frequency of the speech between the interlocutors (22) . During this process, names of participants were replaced, using the coding from P1 to P10. After this step, the statements were categorized through the construction of the Dialogical Map, a feature that allows to give visibility to the analysis process in the construction of the research by exposing the context of coproduction of the discursive practices (22) . Three thematic categories of analysis were used to reveal the positioning of the speech emitter, exposing the different interactions that can originate (22) : a) oral health-disease process and relation with HIV infection; b) access to dental treatment; and c) relationship between oral health and quality of life.
Afterwards, we set out to identify the linguistic repertoires that compose the discursive practices. Analyzing them allows us to perceive how senses were produced on a certain subject (22) . Meaning production is understood as a social practice, of a dialogical character, constructed through the language in use (21)(22) . From the identification of linguistic repertoires, the categories initially produced were adjusted to three themes of analysis: the oral health-disease process related to HIV infection; barriers to access dental treatment; and oral functions impaired by HIV/AIDS.

Parti-cipant
Oral health-disease process related to HIV/AIDS infection Access to dental treatment Relationship between oral health and quality of life

P5
Occasionally, it infects (gingiva) because of the prosthesis, but also, the medicine also causes this to occur, right? I've lost almost everything and I'm here.

P4
And I, after I started taking the medications, it seems that I only live sucking lemon, that the mouth only lives bitter (laughs) Yeah, the mouth is bitter, right ... I already use dentures, right? And the few that I have, it seems that everything is numb, got it?

P4
Then I've come, I've been with the doctor several times, it's been five or six months, she cleaned up, right? She told me to extract the rest...

P4
... it is always frozen and that bitter in my mouth, it seems like nothing I eat, I feel like after the medication. I think it was more the habit of having changed the food, right? Because I used to eat everything before but now...

Oral health-disease process related with HIV/AIDS infection
Participants reported that the problems occurred in the mouth had importance in the health-disease process of HIV/ AIDS, because they caused impacts on their daily lives. When the issue of tooth or mouth pain was brought to the group, the report was heard: [ Bruxism is characterized by the act of grinding or clenching the teeth; is a nonfunctional habit of the masticatory system that may be associated with dental or psychological factors.
Participants reported dental loss attributed to medication use, with a consequent physical impact. In this report, there was a feeling of discouragement with the oral condition. Other participants linked medications to problems in the mouth: Injuries to the oral mucosa as a complication of HIV infection are a common event during the natural history of the disease. Although these injuries have decreased considerably with the advent of antiretroviral therapy, it is noted in the present study that they are still present in the history of the individuals surveyed: [ The term CD4 used by participant refers to the CD4 + T lymphocytes that are the body's defense cells and the main targets of the HIV virus. The involvement of the oral mucosa in seropositive individuals is present from the beginning of the disease and there is an understanding among the study participants that this occurrence is related to the infection: According to the participants' speeches, anguishes and conflicts seem to be parallel to the HIV/AIDS illness, making themselves present in the emotional and social aspects of the daily life of these people.

Barriers to access to dental treatment
Access to dental services is important preventive and curative support to all individuals, especially those with systemic diseases that are determinant for oral complications. Study participants reported that trust and the bond with the professional dentist, such as the recognition of the importance of caring for teeth, predispose the search for dental care: I love dentists too, I love dentists! Then, when I go to the dentist, I settle down and straighten my tooth, because it's good for us to smile, even though! But it's very good, our laughter is our postcard . (P7) However, for other participants, going to the dentist is a last resort to resolve dental problems, which commonly occurs Impacts of health of users with HIV/AIDS in a specialized service Jucá MACL, Silva LB, Silva IAP, Queiroga DEU, Carvalho AMAL, Ferreira SMS. because of pain or tooth decay. For people living with HIV/AIDS, this means increasing the risk of dental loss: In the context of the speech of P4, anguish related to the discomfort and the insecurity in the search for dental care outside the specialized service is noticed, because, at the time, he reported ambiguity of feelings, wishing both to communicate to the dentist his condition of being infected by HIV/AIDS, as well as hiding the disease. He associated his concern with the secrecy regarding his condition of bearer, for fear of exposure to situations of prejudice. Participants reported the occurrence of discrimination in the care for people with HIV/AIDS by health professionals: The speech of P8 reveals, both on the part of the professional, the violation of the code of ethics, punishable by refusal to meet, as well as negative feelings generated in the individual after having their rights denied, especially when this refusal occurs due to the condition of seropositivity. The reported experience revealed an agonizing episode: [ In participant observation and in reports during the focus group, it was possible to perceive the great effort to keep the diagnosis of HIV/AIDS confidential, as well as the fear of being discovered and having to make use of strategies to maintain this secret.

Oral functions hampered by HIV/AIDS
The individual affected by HIV/AIDS begins to face various transformations in their lives that result, as a rule, in social deprivation, affecting daily activities that are pleasurable and essential to the well-being of the people. In relation to this, some participants reported important dietary limitations due to oral-dental deficiencies: [ Exposure to chemical substances is one of the most common causes of taste loss and among medications with this side effect are protease inhibitors -HIV treatment. The mouth has a wide representation of senses and the palate is an important body sense that allows us to recognize the flavors. However, bitterness and dry mouth sensation reported here, may not mean a side effect of medications, but a strong relationship with the emotional component of all illness: [ In participant observation, it was identified that during the dental care to SAE users, educational-preventive information on oral health care. It was also observed that the work routine in this service includes lectures, round conversations and group dynamics, as a way to keep patients well informed about mouth care. It's very important to bring over this theme to us, right? [...] it is because it really is very important to talk about our oral health because it is through mouth that we take our medications, we drink water, we breathe. (P7) It was observed that participants who showed greater compliance with the dental discourse deserve greater care with the mouth, and those who had more events of oral-dental deficits, when talking about their experiences, encouraged others to make their reports, contributing to the enrichment of the group discussion.

DISCUSSION
As found in the literature, study participants stated that there is a need for adaptations in living with HIV/AIDS. They talked a lot about their diet, reporting the changes they experience in eating habits, which is also found in other studies (18,23) . Healthy food, understood as a human right, must include biological, social and cultural needs (24) . However, some participants said that due to the disease, they present oral health problems and, therefore, they need to limit themselves to the consumption of processed foods, which lose their taste and compromise adequate nutrition. In addition, the alimentary practice constitutes a social function, since it acquires diverse meanings and changes to each historical period and context (25) . Thus, the negative impact on the quality of life of people living with HIV/AIDS is also present when they find it embarrassing to participate in meetings, social gatherings and social events, moments in which due to oral problems, it is not possible to share with friends and family.
Participants also reported limiting routine work functions due to physical weakness and fatigue, similar to previous study (18) . Feeling physically limited certainly involves feelings of inadequacy and lack of autonomy, with consequent harm to the subject. In fact, adequate and supervised physical activity can contribute to the psychological well-being and enhancement of the immunity of people with HIV/AIDS (26) .
A key issue for people living with HIV/AIDS is medication compliance. Although these people understand the importance of treatment, factors such as side effects often lead to withdrawal of medication (27) . This was evidenced in this study, through the speeches, which associated unpleasant sensations occurred in the mouth to the treatment, even taking away the pleasure of eating. Although the research participants are informed about the possible effects of the medications in the body, there is still a need to better orient their relationship with tooth loss and other complaints of discomfort in the oral cavity.
Studies conducted with HIV-infected and non-HIV-infected individuals show that injuries on the oral mucosa interfere negatively with quality of life (12,28) . Periodontal problems may be potentiated by HIV infection, and its susceptibility is conditioned by low immunity (29) . They affect the tissues of tooth support and are also influenced by problems related to oral hygiene, even when information about such care is insufficient during the course of individuals' lives (30) . These diseases may be potentially disabling and capable of influencing people's daily lives (28) . These problems were pointed out in several statements by participants, impacting their quality of life.
A previous study, which evaluated the impact of tooth loss on quality of life, highlighted the issue of the subject feeling ashamed, stating that the aesthetic function of the teeth is often considered more important than the masticatory function (19) . However, this feeling may vary from person to person, because it is a subjective issue of a psychological, social and cultural nature (14) .
The quality of life of these people is also impacted by the anguishes experienced and the stigma related to HIV/AIDS (4) . To speak of prejudice with people living with HIV/AIDS is to talk about a phenomenon that generates much suffering (15) . It is verified that, among the situations to be faced daily by people with HIV/AIDS, are the episodes of discrimination and rupture of affective relations (16) . Prejudice produced in the family environment are reported as the greatest difficulty experienced by people with HIV/AIDS (3) . Religiosity and family support were considered support pillars in coping with the disease, as was also found in another study (16) .
Prejudice to HIV/AIDS is built on socio-cultural concepts prior to illness, such as stigmata in relation to sexuality and gender, closing a set of standards or stereotypes that lead to the punishment of those who surpass them, who become victims of prosecution, isolation and rejection (31) . Since the discovery of the virus, attitudes of stigmatization of the disease constitute social barriers to people with HIV/AIDS (32) . When discrimination is practiced by professionals in the health services, as reported by some study participants, a strong barrier of access to oral health and, consequently, to quality of life (33) . Well-informed professionals on HIV-related technical issues, with participation in Permanent Education to care for HIV-positive people and with a history of previous professional experience with these users, are more willing to serve this population (34) . Permanent Education in health, when present in the services, operates changes in the work processes, favors the creation of bonds between the subjects and amplifies the potential of reflection and action on the health needs (35) , being a fundamental device for the qualification of professionals who care for people living with HIV/AIDS. Study participants also reported that they avoid seeking dental services in non-specific places for the public with HIV/AIDS, for fear of not having the necessary care to sterilize the equipment and thus be able to transmit the virus. This demonstrates the need for communication to the population about effective measures to control the transmission of this infection, which should be adopted in dental offices (36) . There is a high probability that participants in the present study were able to access dental services on a regular basis, only from their insertion in the specialized service for HIV/AIDS, when they did not present a good oral condition, a fact similar to that demonstrated in another research (17) . It also contributes to the late access to dental services, the ideology of the search for these professionals only when there is risk of injury to the tooth, caries or injury (37) .
Oral problems perceived by the group studied demonstrated the need to keep people with HIV/AIDS well informed about oral health care. Positive and significantly associated factors with visits to the dentist can lead to high levels of knowledge and perceptions about the importance of oral health for HIV-positive individuals (38) . The subjective involvement of the dental professional with the production of comprehensive care should be prioritized, building relationships and links with the daily life of users (37) . There is also a need for care actions that denature dental loss and, thus, positively impact oral health and quality of life Impacts of health of users with HIV/AIDS in a specialized service Jucá MACL, Silva LB, Silva IAP, Queiroga DEU, Carvalho AMAL, Ferreira SMS. of users (7) . Access to quality dental services in the public health network reduces health inequalities and has a positive impact on the quality of life of the assisted users (6) . It is also demonstrated that the existence of a dental service, in the places of specialized care for people with HIV/AIDS, improves the demand for care, becoming the service preferentially chosen by these users, for the ease of access and guarantee of confidentiality (17) .

Study limitations
The dialogue about the topic with users, in the service where they receive assistance, may have been a limitation. However, care was taken not to involve SAE health professionals in the focus group. Researchers were not part of the service and participants were not, on the day of the group, scheduled for dental consultation.

Contributions to the health area
The reports in the study group dealt with domains of the construct quality of life related to seropositivity that extrapolated the proposed theme. The term prejudice has permeated every dialogue, and its strong point in denial of care by the dental surgeon. This demonstrates the need to offer dental services in SAE for the care for people living with HIV/AIDS and the implementation of public policies of Permanent Education for all professionals involved in the care for this population. This is yet another study that exposes the importance of an expanded view of care, valuing aspects of a subjective nature that allow the individual to understand in all its dimensions.

FINAL CONSIDERATIONS
The health-disease process involves many aspects of the lives of people with HIV/AIDS. In this study, participants reported that the impacts of oral health on their lives show limitations for the performance of work and physical activities, and also the aesthetic ones, because they produce damages in the scope of social relations. They also reported not being able to eat properly, have feelings of shame due to tooth loss and feel anguish about the need for dental care. Participants reported that most of the oral problems were the effects of using medications for HIV/AIDS treatment.
Discrimination and prejudice are an important barrier to access to dental services, both for fear of breach of confidentiality and for the discriminatory attitude of the oral health professional. Participants expressed feeling more comfortable in seeking dental services in Specialized Care Services for HIV/AIDS, which demonstrates the current importance of maintaining these services for this population. The creation of spaces for health professionals to discuss practices of prejudice and discrimination against HIV/AIDS and the rights of users in the Brazilian Unified Health System (Sistema Único de Saúde) can contribute to a change in the modes of care for these users.
It is considered necessary the implementation of policies of Permanent Education in health to all professionals involved in the care for this population, with the purpose of guaranteeing the qualification of care and offering a greater sense of security and confidence to individuals living with HIV/AIDS in access to services. It is also suggested that the dental surgeon invest permanently in the understanding of what it means for individuals to live with HIV/AIDS. And, from this, to appropriate the multiple senses and social uses of the mouth for these subjects, in order to promote a comprehensive and effective care for their quality of life.

FUNDING
Research developed with financial support from the "Seed Program of Scientific Initiation" of the Centro Universitário CESMAC.