Researchers from Universidade Federal de São Paulo (Unifesp) in São Paulo, southeastern Brazil, published a study in the June 2016 issue of Revista Paulista de Pediatria exploring the meaning of "adolescence living with human immunodeficiency virus (HIV)" by a group of patients who acquired the infection perinatally, and the elements implicated in the adherence to antiretroviral treatment.
The authors point out that, in the third decade of HIV epidemic, health care professionals, researchers, and caregivers are faced the first generation of adolescents and young adults who became infected through vertical transmission. In addition to adolescence, a stage of life marked by changes, discoveries, search for identity and autonomy, these adolescents have a disease full of stigmatizing attributes and the complex legacy of secrets involving families affected by HIV. Moreover, many of them have lost their parents due to acquired immunodeficiency syndrome (AIDS), resulting in early bereavement, disruption of affective bonds, and family rearrangements. For professionals seeking to care for their patients in all their dimensions, it is critical to identify the particularities, desires and difficulties, from the perspective of the adolescents themselves. In this sense, the objective of the study by Unifesp – conducted through an international collaboration between Brazilian, Canadian, and French researchers – was to explore the meaning of "adolescence living with human immunodeficiency virus (HIV)" by a group of patients who acquired the infection perinatally, and the elements implicated in the adherence to antiretroviral treatment.
This qualitative study included 20 adolescents aged from 13 to 20 years, selected from a group of 268 participants in the longitudinal study Adoliance, an international cooperation project for the study of psychosocial factors related to the life experiences of HIV-positive young individuals, which started in April 2009.
The authors found that living as an adolescent with HIV involves subtle dimensions, such as silences and secrets, the expression of their sexuality, and virus transmission dilemmas, as well as the management of a complex therapeutic regimen, whose secondary effects cannot be neglected. "The study showed that the adolescents search constantly for normality and make an effort to forget that they have a disease full of stigmatizing attributes and that still currently isolates, discriminates, and leads HIV-positive people to keep their disease in secrecy," said Professor Daisy Maria Machado, one of the authors of the research. According to the professor, although HIV is considered a stressor in the journey toward adulthood, these boys and girls seek autonomy, long for freedom and transformation, and, similarly to their uninfected counterparts, have concerns about an unknown world that is still to come.
The researchers concluded that the abovementioned aspects represent an important portion of the main experiences of the young population with HIV, and recognizing these aspects, in addition to being used to guide the work of the multidisciplinary team, may also contribute to improve care in all its dimensions, whether physical, psychological or social. "Qualitative research using in-depth interviews was an extremely valuable tool, because it valued the meaning of individual's experience, which allowed to gain a broad and deep understanding on the object of study and interpret the situation from the participant's perspective," concluded Professor Daisy Maria Machado.
The research was financially supported by the Research Support Foundation of the State of São Paulo (Fundação de Amparo à Pesquisa do Estado de São Paulo, FAPESP) and the French National Agency for Research on AIDS and Viral Hepatitis (Agence Nationale de Recherche sur le Sida et les Hépatites Virales, ANRS).
Daisy Maria Machado
Universidade Federal de São Paulo - Escola Paulista de Medicina. CEADIPe - Centro de Atendimento da Disciplina de Infectologia Pediátrica.