RESEARCH ARTICLES

Group health promotion for patients with human immunodeficiency virus

Larissa de Araújo Lemos^I; Maria Luciana Teles Fiuza^II; Agnes Caroline Souza Pinto^III; Marli Teresinha Gimeniz Galvão ^IV

^I RN. M.Sc. in Nursing, Graduate Nursing Program, Universidade Federal do Ceará. Fortaleza, Ceará, Brazil. E-mail: lariss_araujo@hotmail.com
^II RN, Infectology Outpatient Clinic, Hospital Universitário Walter Cantídio. M.Sc. in Nursing, Graduate Nursing Program at Universidade Federal do Ceará. Fortaleza, Ceará, Brazil. E-mail: lt.fiuza@hotmail.com
^III RN, Instituto Federal de Ciência, Tecnologia e Educação do Ceará. M.Sc. in Nursing, Graduate Nursing Program at Universidade Federal do Ceará. Fortaleza, Ceará, Brazil. E-mail: agnespinto@hotmail.com
^IV RN. Ph.D. in Tropical Illnesses. Professor, Undergraduate and Graduate Nursing Program, Universidade Federal do Ceará. Researcher, Brazilian Scientific and Technological Development Council. Fortaleza, Ceará, Brazil. E-mail: marligalvao@gmail.com

ABSTRACT

This study aimed to grasp subjects developed in a self-help group focusing on health promotion by patients with Human Immunodeficiency Virus (HIV). Descriptive and qualitative study, was made at University Hospital Walter Cantídio in Fortaleza-Ceará, between February and October 2010. Constituted as data sources report of group activities on 53 patients with HIV. The speeches were analyzed according to content analysis. Were prepared four categories: Discovery of HIV status; Stigma and prejudice; Change behavior; and Financial difficulties. The feelings of discovery, the situations of prejudice and the changes imposed by the disease, as a result of monitoring of infection, portray the scene of suffering that these patients face. On the other hand, there are changes in behavior in search of improve health and prevent injuries. In conclusion, the actions of health promotion encouraged in the group provide clarifications and encourage clients to live more healthily.

Keywords: Nursing; self-help groups; HIV; health promotion.

INTRODUCTION

The conception of health restricted to the biological and individual dimension, which characterizes the biomedical model, which is dominant in public policies, is insufficient to respond to the health needs and social demands of the population. This gives rise to inquiries in different organized sectors of society, mainly as from the 1970's, generating the proposal to construct a new health care model in Brazil¹.

Thus, the health promotion movement emerged in response to the commercialization of medicine, to the cost containment by the state and to the emphasis on the use of a biomedical model, beside the sociopolitical context that aimed for individual accountability in health. As opposed to the former public health policies, which were focused on the individual causes of illnesses, the new movement was anchored in socioenvironmental trends in health standards. The launch of the Ottawa Charter in 1986, in which an ideological base was formulated for health promotion, defines health promotion as the process through which individuals are enabled to exert greater control on how to improve their own health, which means the acknowledgement of the importance of power and control for health promotion². One of the strategies recommended for the implementation of the National Health Promotion Policy envisages the inclusion of health promotion actions at all care levels, with emphasis on primary health care, prioritizing actions to deliver health care and reduce vulnerabilities and health risks³.

Hence, health promotion practices should take place at the primary, secondary and tertiary levels, as a comprehensive health care network. It is observed, however, that these activities happen punctually in tertiary and quaternary services, prioritizing individual and curative care actions⁴.

In the tertiary context, in outpatient care, health promotion takes place in the specialized care service (SCS), through care delivery to patients with the Human Immunodeficiency Virus (HIV), offering care, prevention and treatment to the patients and thus enhancing these clients' bond with a multiprofessional team that delivers care throughout their disease. As a part of SCS, nurses are responsible for holistic health care, aiming for health promotion and prevention⁵.

In that sense, the aim in this research was to identify themes addressed by HIV patients in a self-help group focused on health promotion.

LITERATURE REVIEW

Health promotion can be considered in two main axes. In the first, it is an activity focused on changing individual behaviors, emphasizing their lifestyles, locating them at the heart of families, in the context of the communities they live in. Therefore, health promotion activities tend to concentrate on educative elements. The second axis is based on the understanding that health is found in different quality of life related factors, such as: diet and nutrition, housing and sanitation, good work conditions, educational opportunities in life, clean physical environment, social support for families and individuals, responsible lifestyle and an appropriate health care spectrum⁶.

The use of self-help groups for health promotion contributes to the development of interdisciplinary interventions of cooperative actions that permanently aim to alter individuals' health level and living conditions, mainly those living in situations of vulnerability and low autonomy, like individuals with HIV and the Acquired Immunodeficiency Syndrome (AIDS). In this context, the self-help groups attempt to articulate the participants' knowledge, skills and attitudes in one health concept, aiming to address emotional, social and biological aspects, contributing to the solution of shared problems⁷.

Over the years, comprehensive care has gained other dimensions, increasing the responsibility of the health system for the quality of health care. Beyond the articulation among health production strategies, comprehensiveness implies health professionals' enhanced listening in the relation with their clients, whether in the individual or collective sphere, so as to modify the strict attention to their disease and symptoms in order to welcome their history, their living conditions and health needs, respecting and taking into account their particularities and potentials to contribute to health care³.

METHOD

A descriptive and qualitative research was undertaken. Qualitative studies emphasize the understanding of human experience as it is lived, through the collection and analysis of subjective narrative materials, using flexible procedures that evolve in the field⁸.

The data sources were the forms completed during the group activities, which took place at the specialized care service for HIV/AIDS patients of Hospital Universitário Walter Cantídio (HUWC), in Fortaleza, Ceará, Brazil. Data were collected between February and October 2010.

The self-help group is aimed at people living with HIV/AIDS, companions, partners or relatives of the patients who participate in health care. Sessions are held every week, in a private room, and take an average 60 minutes. Although this activity is offered to all patients, participation is voluntary. After having confirmed their presence for medical care, anyone wishing to participate in the activity spontaneously goes to the room where the group meets. A nurse and a nursing student coordinate the activities. While the nurse mediates the themes discussed in the group, the student carefully writes down the participants' statements on a form exclusively elaborated for this purpose.

To clarify the proposed objectives, the group forms that contained the following information were evaluated: number of participants, gender, age, patient statements and themes discussed in the group. The data derived from the 33 group activities that took place during the study period, involving 53 patients and six companions.

The participants' testimonies and statements were processed individually. The forms were reviewed, read and reread to guarantee data reliability. To protect the patients' anonymity, each patient was symbolically named with the letter P (participant) followed by an Arabic numeral, according to the order of their participation in the group.

To analyze the reports, the content analysis technique was used to understand the communication or discourse and extract the most relevant aspects from the testimonies⁹. The analysis involved the following phases: organization and systemization of idea; exploration of material, corresponding to the systematic transformation of gross data from the text, by aggregation, with a view to reaching a representation of the contents or its expression and, consequently, the understanding of the text; treatment of results, inference and interpretation. After these phases, related ideas were agglutinated in the attempt to address health promotion issues, presented in four categories: discovery of seropositive status; stigma and prejudice; behavioral change; financial difficulties.

This research received approval from the Research Ethics Committee (COMEPE) at Universidade Federal do Ceará, under protocol No 249/09, which was revalidated in 2010. Thus, all premises established in National Health Council Resolution 196/96 were complied with.

RESULTS AND DISCUSSION

To achieve the research objectives, the results were divided in categories that emerged from the participants' statements. These categories, whether associated or not, make it easier to understand the health promotion needs in case of HIV/AIDS. The categories that were elaborated are described next.

Discovery of seropositive status

This category is related to the feelings aroused by the discovery of the HIV diagnosis. In general, this initial moment is loaded with feelings of sadness, guilt and despair, revealing the non-acceptance of this new condition¹⁰. Among the study subjects, testimonies were apprehended that were permeated by negative feelings, described in the following statements:

When I got the result, the world fell apart [...] I felt devastated then. (P21)

I found out when I got very ill. I lived only and then they took me to hospital. I felt sad when they told me. (P15)

I don't know how this happened. I'm very confused. How am I going to tell my wife that, one day, we had a fight, I left, had a night out and caught this disease? (P34)

A study reveals that discovering the HIV diagnosis arouses a range of feelings and behaviors, such as fear, despair, confusion, judgment of what the disease can cause, fear of family rejection, among others. These feelings may emerge due to lack of knowledge about the disease and its treatment. Thus, incorporating the diagnosis into one's life is a condition that creates anxiety and suffering¹¹.

Some individuals are surprised by the diagnosis, while others do not reveal any reaction whatsoever to the result, probably due to infection risk behaviors, so that they were expecting a positive diagnosis, or simply did not know about the severity of the disease. As observed in the following statement:

I did not feel anything. It was normal for me (P11)

This fact is also described in another study of seropositive patients and their relatives, who reported that they received the diagnosis without any further impact, especially in those cases when suspicions existed¹⁰.

It is observed that, soon after the turbulent post-diagnosis period, the need emerges to cope with the feelings related to the initial impact of discovering one's HIV positive status, in which the individuals need to move on with their life, although many changes will happen in their daily reality. These changes affect the individuals as well as to the people who relate with them. They involve habits, routines and conceptions regarding health and their own life¹².

The coping with the disease and its incorporation into the process of living are issues that normally create anxiety and suffering. Some seropositive patients express stigmas they experience as a result of AIDS, partially resulting from information that involves sexuality, fear of the unknown, taboos and the imminence of death¹³.

When patients overcome the denial phase of the disease, however, and perceive that they need to move on with their lives, the process of acceptance starts, as perceived in the following statements:

At first, it was very difficult to accept my condition. I am accepting my problem better, I have to move on with my life. (P17)

When I found out I started to get depressed [...]and today I am very happy, it is as if the disease did not exist. (P41)

Hence, it was observed that, despite the difficulty to face the harsh reality of being an HIV patient, in general, over time, this troubled period gradually dispels, to the extent that these individuals start to accept their condition and to cope with the difficulties deriving from their seropositive status.

Stigma and prejudice

The revelation of the HIV or AIDS diagnosis is a detrimental process for most individuals as the discovery of the diagnosis by other people may entail loss of support by important people, discriminatory attitudes and social isolation. Thus, the fear of AIDS permeates the discovery of the virus to make the diagnosis public. This implies the exposure of intimate aspects, which are subject to moral judgments¹⁴, as shown in the following statements:

I am very scared that other people will find out that I'm seropositive. (P2)

There's great prejudice. Only my family knows that I have it. (P6)

I suffer a lot because of the prejudice. (P25)

Before the diagnosis, I had a very big cycle of friends, now [...] (P34)

Support from family and friends reveals to be a fundamental factor to facilitate life with the disease. Nevertheless, discrimination continues to exist at the heart of the family and in contacts with close persons and, when this happens, the individual feels like a stranger, even in a known environment. When the patients experience situations of secrecy and prejudice in family contacts, they demonstrate the need to share their anxiety and problems and thus, adapt better to the stress they are going through⁷. The meetings of the self-help group make it easier to live with and accept the disease. In this study, the presence of companions/family members in the self-help group demonstrated that coping with the difficulties deriving from HIV/AIDS is easier with the support of loved ones.

Other study participants indicated their difficulties to get a job, as the health care inherent in being seropositive causes absences or delays in work. These situations force them towards the revelation of the diagnosis and entail the probable stigmatization associated with AIDS, followed by discrimination and, consequently, exclusion from the job world:

I am looking for a job, it's difficult, but I have to get one. (P51)

People with HIV/AIDS attempt to hide the disease as a social survival strategy. Thus, they can continue living as normal people, without being accused or discriminated against, whether inside their family, in social or professional contexts. In the latter, hiding the HIV is a way to maintain their job, as they are at risk of prejudice if their secret is revealed¹⁵.

A study revealed that HIV/AIDS patients are targets of prejudice in the work environment. Many gave up looking for other job opportunities due to admission exams or even preferred being fired to keep up their treatment. Moreover, absences, delays, fear of stigmatization, periodical medical exam requirements and physical weakness make it difficult to return to the job market, thus causing an increasing pauperization process of the epidemic¹⁶.

Some people, in turn, demonstrated that they are not afraid of discriminatory attitudes, revealing their diagnosis when necessary. According to the following testimonies:

Prejudice is not a problem and I don't hide it from anyone. (P4)

If necessary, I tell that I've got HIV and claim my rights, no matter at what cost. (P41)

Attitudes of stigma and social prejudice are mainly stimulated by the fear of contagion and lack of information, causing suffering in seropositive people who are targets of social isolation. This stigma also represents an obstacle to promote the health of these individuals living with HIV/AIDS and its perception strongly affects their lives, directly interfering in their destiny¹⁵.

Behavioral change

As a result of the physical and psychological suffering caused by having caught the disease, individuals with HIV/AIDS reconsider their attitudes towards the facts and change their behaviors. Thus, the daily life of seropositive patients is affected by the discovery of AIDS¹⁰.

Changes in daily life were observed with regard to constant health surveillance and permanent care in the attempt to maintain wellbeing. Most study participants mentioned changes in their health habits, demonstrating great concern with the use of alcoholic beverages, in accordance with the following testimonies:

After the diagnosis I quit drinking . (P6)

I used to drink a lot, but now, after I found out, I don't drink anymore. (P7)

I quit drinking and I'm getting along well with my wife [...] thanks God I'm fine. (P12)

They also demonstrated relevant changes, like the search for a healthier diet and physical exercise:

My diet is good and I walk whenever I can. (P19)

I have a balanced diet now and that helps me a lot. (P27)

Maintaining a behavior or not can be associated with the positive or negative consequences it entails for people's lives. This can be observed in the study group as, in many cases, after discovering their seropositive status, HIV/AIDS patients went through positive changes in their daily lives. It was observed that they learn to value each person day by day, including situations that used to go by unnoticed, which seems to be related to the still disseminated idea about the proximity of death.

The positive changes in patients' daily lives probably did not result from health monitoring alone. They may also result from taking part in the self-help group, which represents one of the opportunities for patients to be heard and contribute to other people, based on their personal experience, at the same time as others can help them to better understand the disease, creating feelings of understanding and mutual help, including the possibility to develop a set of growth-promoting or therapeutic attitudes towards oneself.

In addition, it should be highlighted that the patients perceive the appropriate use of antiretroviral therapy as a factor of change in daily life, recognizing the importance of the medication adherence process in the evolution and control of the disease:

I have never stopped taking the medication. (P38)

I am very strict with medication times. (P31)

I take the medication very strictly. (P19)

In another study, the number of pills and daily doses is related with non-adherence to the treatment¹⁷, but that association was not observed in this study. The explanation may derive from the fact that the possible complications resulting from treatment abandonment strongly influence adherence, against expectations^18,19. In specialized care services, patients are strongly encouraged to adhere to treatments, and these orientations are underlined during the self-help group activities.

Another health-related aspect that deserves to be highlighted was the fact that only three patients indicated condom use in sexual intercourse.

I maintain healthy life habits and use a condom in all sexual relationships. (P26)

I have been concerned with my life in terms of diet, drinking and condom use, so I'm gaining weight. (P44)

I've never eaten that strictly, but I use a condom in all relationships now. (P20)

This demonstrates the importance of encouraging condom use among HIV patients, as well as in the general population, as this is one of the points health professionals highlight in health education, as it constitutes the main tool in the struggle against the sexual transmission of the virus ^14,16-20.

Financial difficulties

Some obstacles to health care access are mentioned in the literature for people with HIV/AIDS, including: socioeconomic inequalities, ethnic and gender disparities, availability of social and financial resources, geographical barriers, cultural differences between health professionals and users, fear or actual experience of stigma. As regards health access, difficulties exist with regard to the availability of social and financial capital, the geographical distance between the home and the health service and the relations established between the users and health professionals^21-23.

In view of these bottlenecks, the study subjects' reports show that, sometimes, seropositive individuals are not even aware of the severity of the disease so that, for some, the first concern derives from possible economic difficulties and the negative consequences deriving from the lack of resources for treatment. These difficulties can be observed in the following testimonies:

I am going through severe financial difficulties, which interfere in my treatment, I live with my husband and three children with nothing but the money from the educational grant. (P48)

I am unemployed, I need help, the transportation aid. (P33)

I lost two consults because I didn't have money to go to the hospital. (P48)

These testimonies indicate the difficulties of people who, besides their disease, deal with economic shortages that certainly influence their quality of life and treatment, and are also confronted with obstacles when they look for a job, as a result of their seropositive status.

In another study, it was verified that the quality of life of individuals without any income or gaining less than one minimum wage is compromised, while the participants with a job and, consequently, with a fixed income, showed better quality of life levels²².

Concern with the purchase of medicines, at least in cases of antiretrovirals, is not necessary, as Brazil stands out globally regarding AIDS care and prevention. Thus, the free and universal distribution of antiretroviral medication is guaranteed by the public health system, although not all medicines needed for the treatment of opportunistic infections are included²³.

CONCLUSION

Through this study, the needs and the main circumstances related to life with HIV infection could be identified with a view to a full life and the achievement of better health levels. The following categories emerged from the HIV patients' statements: discovery of seropositive status, stigma and prejudice, behavioral change and financial difficulties that picture the context of suffering and hazards these patients are confronted with. On the opposite, behavioral changes take place in the attempt to improve health and prevent problems. In addition, support from friends and loved ones in perceived as a facilitator for coping.

Besides offering more complex care, the specialized care service, in turn, works to motivate clients towards health promotion activities, like the meetings of the self-help group.

The following study limitations were considered: the fact that meetings only take place once per week and that patients only returned to the service every four months for a medical consult, disadvantaging more detailed patient monitoring.

The importance of encouragement the reestablishment of the affected individuals' emotional and social wellbeing should be highlighted, so as to contribute to effective treatment outcomes. Therefore, nursing and other health professionals should focus interventions on health promotion and underline that these actions also stand out in health care contexts for HIV patients, at a specialized service, breaking with the idea that health promotion is closely linked to basic care only.

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