The south american context of diagnostic disclosure of adolescents infected by HIV/AIDS: a systematic literature review

Pinheiro, Patrícia Neyva da Costa; Kendall, Bernard Carl; Kerr, Ligia Regina Franco Sansigolo; Pickett, Keith Michael; Luna, Izaildo Tavares; Costa, Maria Isabelly Fernandes da; Luz, Luisa Fânia da Costa

doi:10.1590/1806-9282.66.8.1139

person Patrícia Neyva da Costa Pinheiro

school. Universidade Federal do Ceará – UFC, Fortaleza, CE, Brasil.

0000-0001-7022-8391

person Bernard Carl Kendall

school. Tulane University, Research Support & Education Librarian – Tulane, New Orleans, EUA.

0000-0002-0794-4333

person Ligia Regina Franco Sansigolo Kerr

schoolDoutora em Medicina pela Universidade de Ribeirão Preto. Professora titular da Universidade Federal do Ceará – UFC, Fortaleza, CE, Brasil.schoolUniversidade Federal do Ceará, Fortaleza, CE, Brasil

0000-0003-4941-408X

person Keith Michael Pickett

school. Master of Library and Information Science. Research Support & Education Librarian, Tulane University, New Orleans, LA, EUA.

0000-0002-2123-5410

person Izaildo Tavares Luna

school. Universidade Federal do Ceará – UFC, Fortaleza, CE, Brasil.

0000-0002-6781-3714

person Maria Isabelly Fernandes da Costa

school. Universidade Federal do Ceará – UFC, Fortaleza, CE, Brasil.

0000-0001-7697-9727

person Luisa Fânia da Costa Luz

school. Licenciada em Letras. Especialista em Língua Portuguesa pela Universidade Estadual do Ceará – UECE, Fortaleza, CE, Brasil.

0000-0003-0756-0118

CORRESPONDING AUTHOR: Patrícia Neyva da Costa Pinheiro Rua Alexandre Baraúna, 1115, Rodolfo Teófilo, CE , Brasil – 60430-160 Tel: +55 85 3366-8455 / Fax: +55 85 3366-8456 E-mail:
neyva.pinheiro@yahoo.com.br

Author’s Contribution

All authors contributed equally to this study.

Statement of conflict of interests

Nothing to declare.

Code	Author, Year, Place	Title/ Journal	Design/Sample/Problem
1	Marques et al. , 2006; São Paulo and Santos	Disclosure of HIV infection from the perspective of adolescents living with HIV/aids and their parents and caregivers- Cad. Saúde Pública	- Qualitative; Study; 22 adolescents and 13 cares - HIV Seropositivity
2	Peres et al. , 2008; São Paulo	Family Structure and Adolescent Sexual Behavior in a Poor Area of São Paulo, Brazil- Journal of Adolescet Health	- Cross-sectional study; 296 young people/adolescents- Vulnerability to HIV
3	Lima & Pedro, 2008; Porto Alegre, RS	Growing up with HIV/aids: a study on adolescents with HIV/aids and their family caregivers- Rev Latino-am Enfermagem	Exploratory study with a qualitative approach - Growth and development with HIV
4	Barbosa et al. , 2008; Fortaleza	Stages of change in parents discussions with their children about HIV/aids prevention- Revista Latino America de Enfermagem	- HIV Prevention
5	Galano et al. , 2012; São Paulo	Interviews with family members: the essential tool for planning the disclosure of the diagnosis of HIV/aids for children and adolescents- Ciência & Saúde Coletiva	Qualitative study; 23 parents/relatives- HIV Seropositivity
6	Cammarano Ribeiro et al. , 2013; Rio Grande do Sul	Therapeutic everyday of adolescent who has HIV/aids: self-caring occupation and family solitude- Ciência, Cuidado & Saúde	Qualitative study with phenomenological approach and philosophical theoretical methodological; 16 adolescents- Growth and development with HIV

Intervention	Code/Comparison	Result/Evidence
1	Disclosure of the diagnosis/ Enhancing Care Initiative (ECI)	The disclosure of the diagnosis is a milestone in the life of the adolescents and families. The fear of prejudice, discrimination, and social isolation are complicating factors in the disclosure of the diagnosis. On the other hand, the need for adherence to treatment and questions are facilitators. Adolescents who became infected by vertical transmission have different care in comparison to others. The demand is created by the family and health team.
2	Influence of parents on the behavior of children/ Studies from Latin America, Caribbean and United States	Adolescents living with parents are less exposed to risks. The influence of one or both parents in the life of adolescents contributes to reducing the risks to which they are exposed. Efforts focused on the reduction of risks in adolescence should involve the parents.
3	Treatment, disclosure of the diagnosis, influence of parents and teachers;	Changes in the quality of life of adolescents and their relatives. Changes in lifestyle due to the treatment and care. Confidentiality regarding the disclosure of the diagnosis to society for fear of prejudice, discrimination, and social isolation. No approach from the family, school and health services regarding bodily changes , sexual and reproductive health of these adolescents. Strong influence of the media.
4	Dialog	Adolescents are vulnerable to risks because parents find it difficult to talk with their children about sex/sexuality. Mothers are more present than fathers in the education of their children. Low parental schooling hinders dialog. The inability of parents to establish dialog increases adolescents' vulnerability to HIV/aids. Efforts focused on the prevention of HIV should involve adolescents, families, schools, and health units.
5	Disclosure of the diagnosis; Handbook prepared by members of the Institute of Health of New York	The decision to disclose the diagnosis is a slow and painful process Fear of prejudice, discrimination, and social isolation, guilt, changes in mental health, and desire to live are complicating factors in the disclosure of diagnosis. On the other hand, the need for adherence to treatment, the ability to keep a secret, and questions are facilitators.
6	Treatment	Changes in the quality of life of adolescents. Changes in lifestyle due to the treatment and care. Need for strengthening of self-care strategies. Family was the main support source.

[TFN1] References:

[TFN2] 1. Marques HHS, Silva NG, Gutierrez PL, Lacerda R, Ayres JRCM, DellaNegra M et al . A revelação do diagnóstico na perspectiva dos adolescentes vivendo com HIV/AIDS e seus pais e cuidadores. Cad. Saúde Pública [Internet]. 2006 Mar [cited 2020 Apr 16]; 22(3): 619-629.

[TFN3] 2. Peres CA, Rutherford G, Borges G, Galano E, Hudes ES, Hearst N. Family structure and adolescent sexual behavior in a poor area of São Paulo, Brazil. J Adolesc Health [Internet]. 2007 Feb [cited 2020 Apr 16]; 42(2):177-83.

[TFN4] 3. Lima AAA, Pedro ENR. Growing up with HIV/AIDS: a study on adolescents with HIV/AIDS and their family caregivers. Rev. Latino-Am. Enfermagem [Internet]. 2008 June [cited 2020 Apr 16]; 16(3): 348-354.

[TFN5] 4. Barbosa SM, Costa PNP, Vieira NFC. Stages of change in parents' discussions with their children about HIV/Aids prevention. Rev. Latino-Am. Enfermagem [Internet]. 2008 Dec [cited 2020 Apr 16]; 16(6): 1019-1024.

[TFN6] 5. Galano E, De Marco MA, Succi RCM, Silva MH. da, Machado Daisy Maria. Entrevista com os familiares: um instrumento fundamental no planejamento da revelação diagnóstica do HIV/Aids para crianças e adolescentes. Ciênc. saúde coletiva [Internet]. 2012 Oct [cited 2020 Apr 16]; 17(10): 2739-2748.

[TFN7] 6. Ribeiro AC, Padion SMM, Paula CC, Mota MGC. Therapeutic everyday of adolescent who has hiv/aids: self-caring occupation and family solitude. Ciênc. cuid. saúde [Internet]. 2013 [cited 2020 Apr 16]; 12(1): 139-145.