Abstract

The objective of this article is to identify and describe the illness experiences of people living with communicable chronic conditions. An integrative literature review was carried out in May 2015 in the PubMed, the Literature in the Health Sciences in Latin America and the Caribbean (LILACS) and in the Scopus databases. Through the intersection of keywords and controlled descriptors, eight search strategies were conducted and resulted in the final selection of 12 articles, which were catalogued into two theme categories, in order to group matching themes: (1) experiences with communicable chronic conditions; (2) coping strategies for communicable chronicle diseases. Stigma was identified as the most impacting experience in subjects’ lives, which reverberated negatives feelings. In spite of their illness, subjects adopted healthy lifestyle habits and found support on religiosity/spirituality and on the dimensionality of time as a way to live harmoniously with diseases. We also noticed that the support network (family, health services) plays a key role in the process of living with communicable chronicle diseases. Since the diagnostic, the subjects experience negative feelings and sensations not only because of the fragileness that the disease imposes on their body but also because of the maintenance of the condition, which make them more vulnerable to discrimination, prejudice and stigma. It becomes necessary to strengthen the support network around the subject, in order to encourage improvements in the quality of life of people living with communicable diseases.

Keywords:
Communicable Diseases; Communicable Chronic Conditions; Illness Experience

Introduction

Diseases are characterized as common phenomena in the course of human life. As an experiment, they are continually in the interweaving of the particular dimension of the subject affected by social history, which reflects the socio-cultural context in which the illness is produced and interpreted (Souza et al., 2013SOUZA, K. M. J. et al. Experiências de adoecimento e narrativas: apontamentos teóricos e metodológicos. In: MELO, L. P.; GUALDA, D. M. R.; CAMPOS, E. A. Enfermagem, antropologia e saúde. Barueri: Manole, 2013. p. 188-222.). In this sense, subjects affected by a process of illness establish positions before the diseases, giving them meaning and developing a routine to deal with the event (Rabelo; Alves; Souza, 1999RABELO, M. C.; ALVES, P. C.; SOUZA, I. M. Experiência de doença e narrativas. Rio de Janeiro: Fiocruz, 1999.).

Regarding chronic conditions, although there are significant differences between noncommunicable and communicable diseases, these illnesses confront the diseased people and family similarly in regard to living with a permanent or long-term condition (Alencar, 2006ALENCAR, T. M. D. A vida crônica é novidade na aids: as transformações da aids aguda para a aids crônica sob o ponto de vista dos pacientes. 2006. Dissertação (Mestrado em Ciências) - Faculdade de Medicina da Universidade de São Paulo, São Paulo, 2006.).

In addition to the intrinsic biological aspects of chronic conditions, which require changes in the subject affected, some diseases need deeper adaptations from the social point of view, as it is the case of socially stigmatized diseases. Thereby, the Human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), tuberculosis (TB), leprosy and the viral hepatitis demand that the subject develops strategies to deal with the feelings of exclusion, prejudice and discrimination (Borestein et al., 2008BORESTEIN, M. S. et al. Hanseníase: estigma e preconceitos vivenciados por pacientes institucionalizados em Santa Catarina (1940-1960). Revista Brasileira de Enfermagem, Brasília, DF, v. 61, p. 708-712, 2008. Número especial.; Garcia; Koyama, 2008GARCIA, S.; KOYAMA, M. A. H. Estigma, discriminação e HIV/aids no contexto brasileiro, 1998 e 2005. Revista de Saúde Pública, São Paulo, v. 42, p. 72-83, 2008. Suplemento 1.; Sousa; Cruvinel, 2008SOUSA, V. V.; CRUVINEL, K. P. S. Ser portador de hepatite C: sentimentos e expectativas. Texto & Contexto Enfermagem, Florianópolis, v. 17, n. 14, p. 689-695, 2008.; Touso et al., 2014TOUSO, M. M. et al. Estigma social e as famílias de doentes com tuberculose: um estudo a partir das análises de agrupamento e de correspondência múltipla. Ciência & Saúde Coletiva, Rio de Janeiro, v. 19, n. 11, p. 4577-4585, 2014.).

The presence of social and human sciences in the field of collective health conforms as the structural column of the area, evoking collective studies and itself as social system to the understanding of what is health, as a state and as an object of study (Loyola, 2012LOYOLA, M. A. O lugar das ciências sociais na saúde coletiva. Saúde e Sociedade, São Paulo, v. 21, n. 1, p. 9-14, 2012.). Therefore, it is thus necessary to advance further in producing knowledge in health social and human sciences, especially regarding the theoretical and methodological support for researches (Deslandes; Iriart, 2012DESLANDES, S. F.; IRIART, J. A. B. Usos teórico-metodológicos das pesquisas na área de Ciências Sociais e Humanas em Saúde. Cadernos de Saúde Pública, Rio de Janeiro, v. 28, n. 12, p. 2380-2386, 2012.).

Thus, there is a reason for the development of this integrative literature review, aiming at eliciting reflections on the process of illness in chronic communicable conditions as a way of contributing to the (re-)construction of social reality in the collective scope. The guiding question of this study is: “what senses are experienced by people affected by chronic communicable conditions?” The aim was to identify and describe, borrowing from national and international literature, the illness experiences of people living with chronic conditions.

Methodology

Since 1980, the integrative literature review has been described as a method of research that allows the synthesis of multiple published studies, including the development of relevant research supporting decision-making and improvement of clinical practice (Coriolano-Marinus et al., 2014CORIOLANO-MARINUS, M. W. L. et al. Comunicação nas práticas em saúde: revisão integrativa da literatura. Saúde e Sociedade, São Paulo, v. 23, n. 4, p. 1356-1369, 2014.; Mendes; Silveira; Galvão, 2008MENDES, K. D. S.; SILVEIRA, R. C. C. P.; GALVÃO, C. M. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto & Contexto Enfermagem, Florianópolis, v. 17, n. 4, p. 758-764, 2008.). In addition, it allows for the definition of concepts, the review of theories, the evaluation of evidence and the analysis of methodological issues on a particular theme (Whittemore; Knafl, 2005WHITTEMORE, R.; KNAFL, K. The integrative review: updated methodology. Journal of Advanced Nursing, Oxford, v. 52, n. 5, p. 546-553, 2005.).

This study is configured as an integrative literature review whose guiding question was structured through the PICO strategy (Santos; Pimenta; Nobre, 2007SANTOS, C. M. C.; PIMENTA, C. A. M.; NOBRE, M. R. C. A estratégia PICO para a construção da pergunta de pesquisa e busca de evidências. Revista Latino-Americana de Enfermagem, Ribeirão Preto, v. 15, n. 3, p. 508-511, 2007.): (P) Patient or Problem - subjects affected by chronic communicable conditions; (I) Intervention - personal experiences; (C) Comparison - does not apply to this study; (O) Outcome - feelings and changes in daily life as part of experiencing the chronic communicable condition.

The following steps were considered for the operation: problem identification; selection of sample to be reviewed; definition of the characteristics of the studies and their results; analysis of the information; discussion and interpretation of results; and presentation of the review (Lima, 2015LIMA, M. C. R. A. D. A. Estratégias para o controle da tuberculose no sistema prisional: revisão integrativa da literatura. 2015. Dissertação (Mestrado em Ciências) - Escola de Enfermagem de Ribeirão Preto, Universidade de São Paulo, Ribeirão Preto, 2015.).

Aiming at reaching an appropriate refinement of the articles, the following criteria for inclusion was established: articles published between January 2010 and April 2015, prioritizing, thereby, more recent studies on the subject; scientific research classified as originals and indexed in the databases PubMed, Literature in the Health Sciences in Latin America and the Caribbean (LILACS) and Scopus; articles available in Portuguese, English and Spanish; and articles that answered the guiding question established in this integrative literature review.

Articles that were published prior to the year of 2010, systematic review research and/or integrative literature research, dissertations, theses, as well as publications of official records; and scientific research classified as originals, but those without people living with chronic conditions as subjects of study, were not included.

Two reviewers performed search for articles in different and independent times, in May 2015, in the PubMed, LILACS and Scopus databases. The cross between keywords and controlled descriptors was used to select publications, in order to maximize search strategies, favoring the refined and thorough selection of the articles.

For better understanding and visualization, the keywords were organized into groups (G1, G2, G3 and G4) and controlled descriptors - belonging to the Medical Subject Headings (MeSH) and the Health Sciences Descriptors (DeCS) - have been identified in parentheses, as specified in Chart 1:

Eight search strategies (E) were adopted, considering that, for the cross between keyword and controlled descriptors, a Boolean operator OR was used; among the strategies, Boolean operators AND OR were employed.

Thus, the following strategies were conducted: (E1) cross between the keywords and the controlled descriptors of “G1”; (E2) cross between the keywords of “G2”; (E3) cross between the keywords of “G3”; (E4) cross between the keywords and controlled descriptor of “G4”; (E5) cross between “E2” OR “E3”; (E6) cross between “E1” AND “E2” AND “E3”; (E7) cross between “E1” AND “E5” AND “E4”; (E8) cross between “E6” AND “E4.” Due to the quantity of materials, these were stored in the online reference manager EndNote to facilitate the identification of articles.

Three hundred and fifty two articles were identified in PubMed, 412 in LILACS and 195 in Scopus. At the selection stage, duplicated work in each database and among each other were removed, remaining 489 articles. These, in turn, underwent the eligibility stage, in which the reading of the summaries was decisive and resulted in the selection of 20 publications. Successively, the peer reviewers did a full-text reading of the material, selecting 12 articles to compose the final sample of this integrative literature review. Figure 1 presents a flowchart concerning the process of selection of the articles in this study:

It is noteworthy that these articles were submitted to note-taking (Lima, 2015LIMA, M. C. R. A. D. A. Estratégias para o controle da tuberculose no sistema prisional: revisão integrativa da literatura. 2015. Dissertação (Mestrado em Ciências) - Escola de Enfermagem de Ribeirão Preto, Universidade de São Paulo, Ribeirão Preto, 2015.), to have the information organized and summarized in order to facilitate the production of thematic categories from the grouping of topics. Ethical issues in research have been respected, as well as the copyrights.

Results and discussion

Most articles - seven (58%) - were taken from the PubMed database, four (34%) from LILACS, and one (8%) from Scopus. Regarding languages, eight (67%) studies were published in English and four (34%) in Portuguese. Brazil was the country with the largest number of studies on the theme, with four (34%), followed by China, with three (25%), the United States of America, with two (17%), and the United Kingdom, South Africa and Thailand, with one study (8%) each.

Regarding the journals in which the studies were published, Social Science & Medicine concentrated the largest number - three (25%). The other nine journals (75%) - Qualitative Health Research; Issues in Mental Health Nursing; Health; AIDS Care; Journal of Family Psychology; Interface: Comunicação, Saúde, Educação; Revista da Escola de Enfermagem da USP; Escola Anna Nery Revista de Enfermagem; and Physis: Revista de Saúde Coletiva - presented one study each.

The grouping of topics from the selected articles enabled the construction of two topics: (1) experiences with chronic communicable conditions; and (2) coping strategies in patients with chronic conditions. Chart 2 describes the articles included in these categories, as well as the specifications related to the journal publication/year, title, authors, method, core idea and thematic category:

Taking the concept of hierarchy of evidence proposed by Melnyk and Fineout-Overholt (2011MELNYK, B. M.; FINEOUT-OVERHOLT, E. Making the case for evidence-based practice. In: ______. Evidence-based practice in nursing & healthcare: a guide to best practice. Philadelphia: Wolters Kluwer: Lippincot Williams & Wilkins, 2011. p. 3-24.), an analysis of the information relevant to each study selected was conducted. From that, we observed that they all showed level IV of evidence, which refers to one descriptive or qualitative study.

Thematic category 1: experiences with chronic communicable conditions

The subjectivity of the disease is guided by the possibility of understanding an interior experience as problematic, from processes that transcend the pure individual conjuncture, bypassing the social phenomenon (Nascimento, 2005NASCIMENTO, D. R. Narrativa autobiográfica: a experiência do adoecimento por aids. Mneme, Caicó, v. 7, n. 17, p. 163-179, 2005.). Regarding communicable conditions, the diseased person becomes more sensitive to the emotional problems resulting from losses, anxieties, fears, self-blaming and, especially, social stigmatization (Liamputtong; Haritavorn; Kiatying-Angsulee, 2012LIAMPUTTONG, P.; HARITAVORN, N.; KIATYING-ANGSULEE, N. Living positively: the experiences of Thai women living with HIV/AIDS in Central Thailand. Qualitative Health Research, California, v. 22, n. 4, p. 441-451, 2012.).

Studies such as the ones by Daftary (2012DAFTARY, A. HIV and tuberculosis: the construction and management of double stigma. Social Science & Medicine, Philadelphia, v. 74, n. 10, p. 1512-1519, 2012.), De Santis and Barroso (2011DE SANTIS, J. P.; BARROSO, S. Living in silence: a grounded theory study of vulnerability in the context of HIV infection. Issues Mental Health Nursing, Washington, DC, v. 32, n. 6, p. 345-354, 2011.), Chen et al. (2011CHEN, W. T. et al. In sickness and in health: a qualitative study of how Chinese women with HIV navigate stigma and negotiate disclosure within their marriages/partnerships. AIDS Care, London, v. 23, p. 120-125, 2011. Supplement 1.), Li et al. (2011LI, L. et al. Facing HIV as a family: predicting depressive symptoms with correlated responses. Journal of Family Psychology, Washington, DC, v. 25, n. 2, p. 202-209, 2011.) and by Mazanderani and Paparini (2015MAZANDERANI, F.; PAPARINI, S. The stories we tell: qualitative research interviews, talking technologies and the “normalisation” of life with HIV. Social Science & Medicine, Philadelphia, v. 131, p. 66-73, abr. 2015.) corroborate this understanding, revealing the stigma as the experience of the greatest impact on the lives of PLWA and TB.

It is stressed that the creation of the term stigma is attributed to the times of Ancient Greece, referring to bodily signs that showed something extraordinary or bad about the moral status of those who had them (Goffman, 1988GOFFMAN, E. Estigma: notas sobre a manipulação da identidade deteriorada. 4. ed. Rio de Janeiro: LCT, 1988.). In the 1960s, the term gained new prominence from the reflections of Goffman (1988GOFFMAN, E. Estigma: notas sobre a manipulação da identidade deteriorada. 4. ed. Rio de Janeiro: LCT, 1988.), which include the direct participation of society in the process of stigma formation. In this way:

The high prevalence of HIV/AIDS and TB in subjects considered on the margins of society (sex workers, men who have sex with men, women, people living in impoverished and overcrowded regions, immigrants) makes them even more vulnerable to the stigma and prejudice. The consequences of this phenomenon can undermine the control policies of these diseases, to the extent that they contribute to the low demand for HIV testing and TB tests and, above all, low adherence to treatments (Daftary, 2012DAFTARY, A. HIV and tuberculosis: the construction and management of double stigma. Social Science & Medicine, Philadelphia, v. 74, n. 10, p. 1512-1519, 2012.).

Chen et al. (2011CHEN, W. T. et al. In sickness and in health: a qualitative study of how Chinese women with HIV navigate stigma and negotiate disclosure within their marriages/partnerships. AIDS Care, London, v. 23, p. 120-125, 2011. Supplement 1.) analyzed the impact of the decision of women living with HIV/AIDS to disclose their pathological condition to their families. For these participants, the directions related to the stigma of the disease were more terrifying than the immediate threat to life, represented by a disease such as cancer. In this way, the disclosure of their diagnosis considered the nature and the quality of their personal relationships, and most of them privileged partners/spouses and close relatives (Chen et al., 2011CHEN, W. T. et al. In sickness and in health: a qualitative study of how Chinese women with HIV navigate stigma and negotiate disclosure within their marriages/partnerships. AIDS Care, London, v. 23, p. 120-125, 2011. Supplement 1.).

Results in line were observed in the studies by De Santis and Barroso (2011DE SANTIS, J. P.; BARROSO, S. Living in silence: a grounded theory study of vulnerability in the context of HIV infection. Issues Mental Health Nursing, Washington, DC, v. 32, n. 6, p. 345-354, 2011.) and by Liamputtong, Haritavorn and Kiatying-Angsulee (2012LIAMPUTTONG, P.; HARITAVORN, N.; KIATYING-ANGSULEE, N. Living positively: the experiences of Thai women living with HIV/AIDS in Central Thailand. Qualitative Health Research, California, v. 22, n. 4, p. 441-451, 2012.), in which PLWA revealed the need for concealing/hiding their diagnosis information, considering the feelings of shame and fear of others. Thus, they limited the sharing of that information to just a few family members.

The need to omit the health condition generated in subjects the feelings of denial of the diagnosis, fear of misunderstanding and abandonment by close people, depression and insecurity. Feelings that resulted, at times, in suicidal thoughts - predominantly in women -, considering that some female participants revealed to have physically attempted to take their own lives (Liamputtong; Haritavorn; Kiatying-Angsulee, 2012LIAMPUTTONG, P.; HARITAVORN, N.; KIATYING-ANGSULEE, N. Living positively: the experiences of Thai women living with HIV/AIDS in Central Thailand. Qualitative Health Research, California, v. 22, n. 4, p. 441-451, 2012.) and others adopted stances of not adhering to HIV/AIDS treatments, in an attempt to speed up the process of death by the disease (De Santis; Barroso, 2011DE SANTIS, J. P.; BARROSO, S. Living in silence: a grounded theory study of vulnerability in the context of HIV infection. Issues Mental Health Nursing, Washington, DC, v. 32, n. 6, p. 345-354, 2011.).

If, on the one hand, the social stigma turns into feelings that weaken the experience of living with communicable diseases, on the other, they legitimate the feeling of segregation among the diseased subjects. Supported by this understanding, Daftary (2012DAFTARY, A. HIV and tuberculosis: the construction and management of double stigma. Social Science & Medicine, Philadelphia, v. 74, n. 10, p. 1512-1519, 2012.) noted that subjects co-infected by HIV/AIDS and TB brought to the surface feelings of dual identity in relation to damages.

These dichotomous feelings invoked the construction of a positive self-identity, associated with the morally sane and correct, in which TB was naturalized, given its ability to affect a wider portion of the population and, above all, by its curable aspect. HIV/AIDS, in turn, raised the construction of negative self-identity, associated with immorality reflected from a deliberate action, with guilt and with the perpetuity of the disease (Daftary, 2012DAFTARY, A. HIV and tuberculosis: the construction and management of double stigma. Social Science & Medicine, Philadelphia, v. 74, n. 10, p. 1512-1519, 2012.).

Furthermore, due to the intense experiences of stigma reported by participants in relation to HIV/AIDS, we noted that negative self-identity has become undesirable and therefore stigmatized, which, aggravated by the dual diagnosis, may have affected the way in which the subjects experienced, understood and shared the feelings of their illness (Daftary, 2012DAFTARY, A. HIV and tuberculosis: the construction and management of double stigma. Social Science & Medicine, Philadelphia, v. 74, n. 10, p. 1512-1519, 2012.).

Although HIV/AIDS has been questioned in most studies, Teston, Silva and Marcon (2013TESTON, E. F.; SILVA, R. L. D. T.; MARCON, S. S. Convivendo com hepatite: repercussões no cotidiano do indivíduo infectado. Revista da Escola de Enfermagem da USP, São Paulo, v. 47, n. 4, p. 860-868, 2013.) made similar observations in subjects living with hepatitis B and C. Most participants received the diagnosis of the disease during blood donation and revealed experiences such as fear, insecurity, powerlessness against the unknown, anguish in clarifying the way they contracted hepatitis and the anxiety related to the maintenance of the treatment.

Although the stigma is still set as one of the leading weakeners in living with communicable conditions, in particular HIV/AIDS, TB and hepatitis B and C, a reverberation of the senses of standardization/naturalization of these diseases as chronic conditions was observed, especially in the light of advances in technology and drug therapy.

In the study by Mazanderani and Paparini (2015MAZANDERANI, F.; PAPARINI, S. The stories we tell: qualitative research interviews, talking technologies and the “normalisation” of life with HIV. Social Science & Medicine, Philadelphia, v. 131, p. 66-73, abr. 2015.), reports of normalization of HIV/AIDS were observed from cognitive and social points of view. The first increased, in participants, an adaptation to the unexpected diagnosis, as well as the incorporation of the disease to their lives in emotional and practical perspectives (treatments). Regarding social standards, participants revealed having a hard time engaging in daily activities (having a job, for example), affective relationships, and children (Mazanderani; Paparini, 2015MAZANDERANI, F.; PAPARINI, S. The stories we tell: qualitative research interviews, talking technologies and the “normalisation” of life with HIV. Social Science & Medicine, Philadelphia, v. 131, p. 66-73, abr. 2015.).

From the abovementioned, one can infer that, although there is an attempt in the reverberation of HIV/AIDS as a chronic condition, the stigma that still persists in relation to communicable conditions weakens the concreteness of this ideology (Mazanderani; Paparini, 2015MAZANDERANI, F.; PAPARINI, S. The stories we tell: qualitative research interviews, talking technologies and the “normalisation” of life with HIV. Social Science & Medicine, Philadelphia, v. 131, p. 66-73, abr. 2015.).

Thematic category 2: coping strategies of chronic communicable conditions

In general, chronic diseases result in disruptions in the lifestyle of individuals, turning into psychological and behavioral changes that require adaptation of life habits and strategies to deal with this new reality (Teston; Silva; Marcon, 2013TESTON, E. F.; SILVA, R. L. D. T.; MARCON, S. S. Convivendo com hepatite: repercussões no cotidiano do indivíduo infectado. Revista da Escola de Enfermagem da USP, São Paulo, v. 47, n. 4, p. 860-868, 2013.).

The strategies adopted by Thai women living with HIV/AIDS are an example of this. To make their life expectancy longer, they live positively with the adoption of habits considered beneficial to health, such as maintaining a healthy diet and exercising regularly (Liamputtong; Haritavorn; Kiatying-Angsulee, 2012LIAMPUTTONG, P.; HARITAVORN, N.; KIATYING-ANGSULEE, N. Living positively: the experiences of Thai women living with HIV/AIDS in Central Thailand. Qualitative Health Research, California, v. 22, n. 4, p. 441-451, 2012.). Similar results were observed in studies by Teston, Silva and Marcon (2013TESTON, E. F.; SILVA, R. L. D. T.; MARCON, S. S. Convivendo com hepatite: repercussões no cotidiano do indivíduo infectado. Revista da Escola de Enfermagem da USP, São Paulo, v. 47, n. 4, p. 860-868, 2013.), considering that the subjects affected by hepatitis B and C, after being diagnosed, have adopted habits considered to be healthier and have reduced the consumption of alcohol.

In addition to the biological care, the close relationship between health and spirituality/religiosity gains prominence in the context of living with the chronic conditions, especially for providing emotional strengthening to the subject before the hardships imposed by the illness (Ferreira; Favoreto; Guimarães, 2012FERREIRA, D. C.; FAVORETO, C. A. O.; GUIMARÃES, M. B. L. A influência da religiosidade no conviver com o HIV. Interface: Comunicação, Saúde, Educação, Botucatu, v. 16, n. 41, p. 383-393, 2012.).

The study by Liamputtong, Haritavorn and Kiatying-Angsulee (2012LIAMPUTTONG, P.; HARITAVORN, N.; KIATYING-ANGSULEE, N. Living positively: the experiences of Thai women living with HIV/AIDS in Central Thailand. Qualitative Health Research, California, v. 22, n. 4, p. 441-451, 2012.), shows that Thai women - most adept to Buddhism - credited the acceptance of the disease to their belief in personal karma. The participants of the study conducted by Ferreira, Favoreto and Guimarães revealed religiosity (2012FERREIRA, D. C.; FAVORETO, C. A. O.; GUIMARÃES, M. B. L. A influência da religiosidade no conviver com o HIV. Interface: Comunicação, Saúde, Educação, Botucatu, v. 16, n. 41, p. 383-393, 2012.) to be used to explain their misfortune, expiate the guilt of contagion and displace negative moral values experienced by these subjects.

The participants also highlighted positive aspects in relation to religion, such as: the spiritual support, religious forgiveness, religious collaborative participation, social connection and a benevolent redefinition of the stressor. However, the religious discontent, the presence of interpersonal conflicts with members of the religious group and doubts about the power of deities in the intervention of HIV/AIDS constituted the negative aspects of religiosity (Ferreira; Favoreto; Guimarães, 2012FERREIRA, D. C.; FAVORETO, C. A. O.; GUIMARÃES, M. B. L. A influência da religiosidade no conviver com o HIV. Interface: Comunicação, Saúde, Educação, Botucatu, v. 16, n. 41, p. 383-393, 2012.).

In this line of thinking, the process of living with HIV/AIDS was scaled after three periods: the linear, which corresponded to the interruption of life with the diagnosis of the disease; the relational, which was the time of sociocultural prioritization of family obligations in relation to the uncertainty of life; and the reconstructed, which was characterized as the moment when participants had the sense of self-realization, acceptance and happiness (Zhou, 2010ZHOU, Y. R. The phenomenology of time: lived experiences of people with HIV/AIDS in China. Health, London, v. 14, n. 3, p. 310-335, 2010.).

The three dimensions are not necessarily correlated with the clinical course of HIV/AIDS, but reflected the fluidity of their own awareness of the subject that may even have been shaped by various contextual factors (health, family relationships, social support, self-reflection) (Zhou, 2010ZHOU, Y. R. The phenomenology of time: lived experiences of people with HIV/AIDS in China. Health, London, v. 14, n. 3, p. 310-335, 2010.). From this, living with HIV/AIDS began to be perceived as a phenomenon of living and growing, rather than dying deteriorating, which, to some extent, became the most useful time for these subjects, allowing the resumption of the protagonism of their lives (Zhou, 2010ZHOU, Y. R. The phenomenology of time: lived experiences of people with HIV/AIDS in China. Health, London, v. 14, n. 3, p. 310-335, 2010.).

For Ferreira and Favoreto (2011FERREIRA, D. C.; FAVORETO, C. A. O. A análise da narrativa dos pacientes com HIV na construção da adesão terapêutica. Physis: Revista de Saúde Coletiva, Rio de Janeiro, v. 21, n. 3, p. 917-936, 2011.), the perspective of protagonism refers to the action, dialogue and attitude of the subject prior to the diseases, HIV/AIDS in particular. Reports that pointed to the construction of new senses to life, the revaluation of aspects of health and self-care that were not considered before diagnosis were observed in this study. Senses of victory against the adversities of life were reverberated, in order to allocate HIV/AIDS as another obstacle to be overcome (Ferreira; Favoreto, 2011FERREIRA, D. C.; FAVORETO, C. A. O. A análise da narrativa dos pacientes com HIV na construção da adesão terapêutica. Physis: Revista de Saúde Coletiva, Rio de Janeiro, v. 21, n. 3, p. 917-936, 2011.).

Taking the protagonism of their lives also denoted a relationship of complicity with the treatment, both from the point of view of commitment to the medication and the relationship with the health team. From this, it becomes necessary to understand the adhesion to the treatment as a mutable state, and not as a watertight condition of the subject. Therefore, adhesion becomes contextualized in the way of being, at the mercy of the daily variability, directly proportional to the movement of autonomy and protagonism of the subject (Ferreira; Favoreto, 2011FERREIRA, D. C.; FAVORETO, C. A. O. A análise da narrativa dos pacientes com HIV na construção da adesão terapêutica. Physis: Revista de Saúde Coletiva, Rio de Janeiro, v. 21, n. 3, p. 917-936, 2011.).

In this perspective, the study by Watkins-Hayes, Pittman-Gay and Beaman (2012WATKINS-HAYES, C.; PITTMAN-GAY, L.; BEAMAN, J. “Dying from” to “living with”: framing institutions and the coping processes of African American women living with HIV/AIDS. Social Science & Medicine, Philadelphia, v. 74, n. 12, p. 2028-2036, 2012.) noted that, since the diagnosis until the active management of life with HIV/AIDS, support institutions (hospitals, clinics and other services that offer care to diseased people) had a key role in the way the subjects determined and dealt with their health condition.

Living with HIV/AIDS, in addition to the emotional management and the physical symptoms of the disease, is, above all, living with previous experiences of pain and exclusion. Therefore, support institutions acted in order to help the subject to glimpse positive situations, regardless of the personal and environmental struggles, reinforcing the perseverance with the adversity of the illness (Watkins-Hayes; Pittman-Gay; Beaman, 2012WATKINS-HAYES, C.; PITTMAN-GAY, L.; BEAMAN, J. “Dying from” to “living with”: framing institutions and the coping processes of African American women living with HIV/AIDS. Social Science & Medicine, Philadelphia, v. 74, n. 12, p. 2028-2036, 2012.).

It is understandable that the confrontation, as well as the adaptation to physical, psychological, spiritual and social changes imposed by living with HIV/AIDS go through effective psychosocial support (family, friends, partners, institutional support groups). Therefore, healthcare providers should pay attention to the influences these changes promote in the lives of PLWA, especially those who lack social support, in order to minimize the negative impact on the health of these subjects (De Santis; Barroso, 2011DE SANTIS, J. P.; BARROSO, S. Living in silence: a grounded theory study of vulnerability in the context of HIV infection. Issues Mental Health Nursing, Washington, DC, v. 32, n. 6, p. 345-354, 2011.).

However, the study by Ballestero et al. (2014BALLESTERO, J. G. A. et al. Tuberculose multirresistente: integralidade da atenção à saúde na perspectiva discursiva. Escola Anna Nery Revista de Enfermagem, Rio de Janeiro, v. 18, n. 3, p. 515-521, 2014.) noted the lack of effective coordination between the services of the network of integral care for people living with MDR-TB. The limitedness of professional stances in relation to the negotiation and adequacy to the particularities of each subject and context, as well as the mismatch between the needs of the diseased people and the service organization ways, have further compromised adherence to treatment (Ballestero et al., 2014BALLESTERO, J. G. A. et al. Tuberculose multirresistente: integralidade da atenção à saúde na perspectiva discursiva. Escola Anna Nery Revista de Enfermagem, Rio de Janeiro, v. 18, n. 3, p. 515-521, 2014.).

The family also fulfills a relevant role from the point of view of social support to people living with communicable diseases. In their study, Li et al. (2011LI, L. et al. Facing HIV as a family: predicting depressive symptoms with correlated responses. Journal of Family Psychology, Washington, DC, v. 25, n. 2, p. 202-209, 2011.) emphasized that the impact of HIV/AIDS can affect directly and indirectly the family context, and the quality of life of both patient and family is directly related to the way they deal with the stressful aspects of the disease.

Liamputtong, Haritavorn and Kiatying-Angsulee (2012LIAMPUTTONG, P.; HARITAVORN, N.; KIATYING-ANGSULEE, N. Living positively: the experiences of Thai women living with HIV/AIDS in Central Thailand. Qualitative Health Research, California, v. 22, n. 4, p. 441-451, 2012.) observed reports of family support to PLWA, especially at the moment of diagnosis, which resulted in positive feelings in relation to fighting the disease. However, Chen et al. reported negative experiences in relation to family support. One of the participants revealed to have been coerced by her spouse to abstain from work/employment in order to minimize the possibility of other people discovering her diagnosis of HIV/AIDS.

Although there are many challenges in living with chronic communicable diseases, much has been advanced, especially regarding the autonomy of the diseased people. At this moment, the social support network (family, health services) plays a fundamental role, and thus it has become a necessity to strengthen these social actors in order to promote further improvement in the quality of life of people affected by chronic conditions.

Final Remarks

This integrative literature review allowed for the observation that the experiences of people with communicable conditions, as well as their coping strategies, conform as themes explored by health social and human sciences, focusing on strengthening the actions of care.

In general, the studies aimed at understanding the phenomena related to the subjective and social dimension of the illness, transcending the biologizing logic of the objective character of the disease. They sought to describe and understand the positive and negative consequences of living with a chronic communicable condition in various sociocultural contexts.

Thus, it was possible to infer that the subjects, in particular those affected by HIV/AIDS, TB and hepatitis, experienced negative sensations and feelings since their diagnosis. This was both due to the fragility the disease had imposed on their bodies, as well as to the maintenance of their condition in contexts that make them even more vulnerable to discrimination, prejudice and social stigma.

References

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