From the discovery of diagnosis to antiretroviral treatment: phenomenological study with young people living with HIV
DOI:
https://doi.org/10.33448/rsd-v9i7.4254Keywords:
Human immunodeficiency virus; Acquired immunodeficiency syndrome; Adolescent; Young adult; Antiretroviral therapy.Abstract
The objective was to understand the youth's experience in HIV diagnosis and their expectations with antiretroviral treatment. Qualitative research, with a phenomenological approach, based on Martin Heidegger's theoretical-philosophical-methodological referential. Data production took place through phenomenological interviews with ten participants aged between 16 and 23 years in a specialized service located in a university hospital in Rio Grande do Sul, Brazil. The units of meaning were: discovering the HIV diagnosis means a shock, but you have to understand and live life; and treatment with antiretrovirals means expecting to continue living and planning the future. The young person's experience in discovering HIV revealed the fact of having a diagnosis that they cannot change and to accept it they need time and support. The expectation with antiretroviral treatment revealed the occupation with self care routine makes it possible to live, be healthy, plan the future and carry out the plans. Understanding the meaning of ARV treatment for youth helps guide care, and it is important to rethink the daily care behavior provided to this population.
References
Adegoke, C. O., & Steyn, M. G. (2018). Yoruba culture and the resilience of HIV-positive adolescent girls in Nigeria. Culture, Health & Sexuality, 20(2), 1-12. DOI: 10.1080/13691058.2017.1422806
Agostini, R., Maksud, I., & Franco, T. (2018). “Eu tenho que te contar um negócio”: gestão da soropositividade no contexto dos relacionamentos afetivo-sexuais de jovens vivendo com HIV. Sexualidad, Salud y Sociedad, (30), 201-223. DOI: 10.1590/1984-6487.sess.2018.30.10.a
Bernays, S., Paparini, S., Seeley, J., & Rhodes, T. (2017). “Not taking it will just be like a sin”: young people living with HIV and the stigmatization of less-than-perfect adherence to Antiretroviral Therapy. Medical Anthropology, 36(5), 485-499. DOI: 10.1080/01459740.2017.1306856
Bortolotti, L. R., Spindola, T., Taquette, S. R., Fonte, V. R. F., Pinheiro, C. O. P., & Francisco M. T. R. (2014). The Meaning of Living with HIV/aids in Adolescence: a Descriptive Study. Online Brazilian Journal of Nursing, 13(4), 537-48. DOI: 10.5935/1676-4285.20144610
Brasil. (2012). Ministério da Saúde. Conselho Nacional de Saúde. Comissão Nacional de Ética em Pesquisa. Diretrizes e normas regulamentadoras de pesquisa em seres humanos. Resolução 466. Brasília.
Brasil. (2013). Ministério da Saúde. Secretaria de Atenção à Saúde. Núcleo Técnico da Política Nacional de Humanização. HumanizaSUS: documento base para gestores e trabalhadores do SUS. Brasília.
Brown, L. K., Whiteley, L., Harper, G. W., Nichols, S., & Nieves, A. (2015). Psychological symptoms among 2032 youth living with HIV: A Multisite Study. AIDS Patient Care STDS, 29(4), 212–219. DOI: 10.1089/apc.2014.0113
Brum, C. N. de, Paula, C. C. de, Padoin, S. M. M. de, Souza, I. E. O. de., Neves, E. T., & Zuge, S. S. (2015). Revelação do diagnóstico de HIV para o adolescente: modos de ser cotidiano. Escola Anna Nery, 19(4), 679-684. DOI: 10.5935/1414-8145.20150091
Burns, R., Borges J., Blasco P., Vandenbulcke, A., Mukui, I., Magalasi, D., & Molfino, L., et.al. (2019). ‘I saw it as a second chance’: A qualitative exploration of experiences of treatment failure and regimen change among people living with HIV on second- and third-line antiretroviral therapy in Kenya, Malawi and Mozambique. Global Public Health, 14(8),1112-1124. DOI: 10.1080/17441692.2018.1561921
Casale, M., Carlqvist, A., & Cluver, L. (2019). Recent interventions to improve retention in HIV care and adherence to Antiretroviral treatment among adolescents and youth: a systematic review. AIDS Patient Care STDS, 33(6), 237-252. DOI:10.1089/apc.2018.0320
Chitra, K. R., & Emmanuel A. E. (2019). Living with HIV/ AIDS: a qualitative study to assess the quality of life of adolescents (13-19 Years) attending ART Centre of Selected Hospital in New Delhi. Indian Journal of Youthand Adolescent Health, 6(1), 28-35. DOI: 10.24321/2349.2880.201905
Costa, V. T., & Meirelles B. H. S. (2019). Adesão ao tratamento dos adultos jovens vivendo com HIV/aids sob a ótica do pensamento complexo. Texto & Contexto Enfermagem, 28, e20170016. DOI: 10.1590/1980-265X-TCE-2017-0016
Erazo, A. M. B., & Erazo, G. E. C. (2018). Más allá de los síntomas: vivir con VIH es motor de cambio. Avances En Enfermería, 36(3), 338-46. Disponível em: http://ciberindex.com/c/rae/363338ae
Freitas, A. C., Avelino-Silva, V. I., Gutierrez, E. B., Marques, H. H. S., Durigon, G. S., & Segurado, A. C. (2019). HIV-infected youths transitioning from pediatric to adult outpatient care in a teaching tertiary care hospital in São Paulo city, Brazil. The Brazilian Journal of Infectious Diseases, 23(5), 291-297. DOI:10.1016/j.bjid.2019.07.004
Galano, E., Turato, E. R., Delmas, P., Côté, J., Gouvea, A. F. T. B., Succi, R. C. M., & Machado, D. M. (2016). Vivências dos adolescentes soropositivos para HIV/Aids: estudo qualitativo. Revista Paulista de Pediatria, 34(2), 171-177. DOI: 10.1016/j.rppede.2015.08.019
Gonçalves, G. F, Cordeiro, B. C., Dias, M. M., & Messias, C. M. (2020). Educação permanente na assistência farmacêutica ao paciente com HIV: uma revisão integrativa. Research, Society and Development, 9(3), e70932426. DOI: 10.33448/rsd-v9i3.2426
Guerrero-Castaneda, R. F., Menezes, T. M. O. de, & Ojeda-Vargas, M. G. (2017). Características de la entrevista fenomenológica en investigación en enfermería. Revista Gaúcha de Enfermagem, 38(2), e67458. DOI: 10.1590/1983-1447.2017.02.67458.
Harper, G. W., Lemos, D., Mutumba, M., Kumar, M., Gikuni, A. W., Mustich, I., & Hooks, K., et al. (2019). Resilience processes among youth newly diagnosed with HIV who live in urban informal settlements in Kenya: Implications for intervention. Journal of HIV/AIDS & Social Services,18(4), 329-346. DOI: 10.1080/15381501.2019.1657546
Heestermans, T., Browne, J. L., Aitken, S. C., Vervoort, S. C., & Klipstein-Grobusch, K. (2016). Determinants of adherence to antiretroviral therapy among HIV-positive adults in sub-Saharan Africa: a systematic review. BMJ Global Health, 1(4), e000125. DOI: 10.1136/bmjgh-2016-000125
Heidegger, M. (2014). Ser e tempo (9 ed.; M. S. C. Schuback, Trad.). Rio de Janeiro: Vozes. (Trabalho original publicado em 1989).
Hornschuh S., Dietrich J.J., Tshabalala C. & Laher, F. (2017). Antiretroviral treatment adherence: knowledge and experiences among adolescents and young adults in Soweto, South Africa. AIDS Research and Treatment, ID 5192516, 8p. DOI:10.1155/2017/5192516
Horter, S., Thabede, Z., Dlamini, V., Bernays, S., Stringer, B., Mazibuko, S., & Dubed, L. (2017). “Life is so easy on ART, once you accept it”: Acceptance, denial and linkage to HIV care in Shiselweni, Swaziland. Social Science & Medicine, 176, 52–59. DOI:10.1016/j.socscimed.2017.01.006
Hussen, S. A., Andes, K., Gilliard, D., Chakraborty, R., Rio, C., & Malebranche, D. J. (2015). Transition to adulthood and Antiretroviral adherence among HIV-positive young black men who have sex with men. American Journal of Public Health, 105(4), 725–731. DOI: 10.2105/AJPH.2014.301905
Imazu, Y., Matsuyama, N., Takebayashi, S., Mori, M., & Watabe, S. (2017). Experiences of patients with HIV/AIDS receiving mid- and long-term care in Japan: a qualitative study. International Journal of Nursing Sciences, 4(2), 99–104. DOI:10.1016/j.ijnss.2017.02.004
Kay, E. S., Batey, D. S., & Mugavero, M. J. (2016). The HIV treatment cascade and care continuum: updates, goals, and recommendations for the future. AIDS Research and Therapy, 13(35). DOI: 10.1186/s12981-016-0120-0
Martinez, J., Harper, G., Carleton, R. A., Hosek, S., Bojan, K., Glun, G., & Ellen, J. (2012). The impact of stigma on medication adherence among hiv-positive adolescent and young adult females and the moderating effects of coping and satisfaction with health care. AIDS Patient Care STDs, 26(2),108-15. DOI: 10.1089/apc.2011.0178
Mittler, J. E., Murphy, J. T., Stansfield, S. E., Peebles, K., Gottlieb, G. S., Abernethy, N. F., & Reid, M. C. et al. (2019). Large benefits to youth-focused HIV treatment-as-prevention efforts in generalized heterosexual populations: an agent-based simulation model. PLoS Computational Biology, 15(12), e1007561. DOI: 10.1371/journal.pcbi.1007561
Ngeno, B., Waruru, A., Inwani, I., Nganga, L., Wangari, E. N., Katana, A., & Gichangi, A. (2019). Disclosureand clinical outcomes among young adolescents living with HIV in Kenya. Journalof adolescente health, 64(2), 242-249. DOI: 10.1016/j.jadohealth.2018.08.013
Okawa, S., Mwanza-Kabaghe, S., Mwiya, M., Kikuchi, K., Jimba, M., Kankasa, C., & Ishikawa, N. (2017). Adolescents’ experiences and Their suggestions for hiV serostatus Disclosure in Zambia: A Mixed-Methods study. Public Health, 15(5), 326. DOI: 10.3389/fpubh.2017.00326.
Paschoal, E. P., Santo, C. C. E., Gomes, A. M. T., Santos, É. I. dos, Oliveira, D. C. de, & Pontes, A. P. M. de. (2014). Adesão à terapia antirretroviral e suas representações para pessoas vivendo com HIV/AIDS. Escola Anna Nery, 18(1), 32-40. DOI: 10.5935/1414-8145.20140005
Paula, C. C. de, Padoin, S. M. M., Terra, M. G., Souza, I. E. O., & Cabral, I. E. (2014). Modos de condução da entrevista em pesquisa fenomenológica: relato de experiência. Revista Brasileira Enfermagem, 67(3), 468-72. DOI: 10.5935/0034-7167.20140063
Pinho, C. M., Dâmaso, B. F.R., Gomes, E. T., Trajano, M. F. C., Andrade, M. S., & Valença, M. P. (2017). Religious and spiritual coping in people living with HIV/Aids. Revista Brasileira de Enfermagem, 70(2), 392-399. DOI: 10.1590/0034-7167-2015-0170
Santos, M. E., Alves, R. C., Malta, A. J., Nunes, Q. A., Gir, E., & Reis, R. (2017). Mecanismos de enfrentamento utilizados por mulheres vivendo com HIV/aids. Revista Cubana de Enfermería, 33(3). Disponível em: http://www.revenfermeria.sld.cu/index.php/enf/article/view/1308/289
Shaw, S., & Amico, K. R. (2016). Antiretroviral therapy adherence enhancing interventions for adolescents and young adults 13–24 years of age: a review of the evidence base. Journal of Acquired Immune Deficiency Syndromes, 72(4), 387–399. DOI: 10.1097/QAI.0000000000000977
Smith, S.T., Blanchard, J., Kools, S., & Butler, D. (2017). Reconnecting to spirituality: christian-identified adolescents and emerging adult young men’s journey from diagnosis of HIV to coping. Journal of Religion and Health, 56(1), 188–204. DOI: 10.1007/s10943-016-0245-4
Souza, E. A. de, & Kind, L. (2017). Vidas que seguem: narrativas ficcionais de jovens vivendo com HIV/AIDS. Psicologia em Revista, 23(3), 1051-1068. DOI: 10.5752/P.1678-9563.2017v23n3p1051-1068
Willis, N., Mavhu W., Wogrin, C., Mutsinze, A., & Kagee, A. (2018). Understanding the experience and manifestation of depression in adolescents living with HIV in Harare, Zimbabwe. PLoS ONE, 13(1), e0190423. DOI: 10.1371/journal.pone.0190423
World Health Organization. (1986). Young People´s Health a Challenge for Society: report of a WHO Study Group on Young People and Health for All by the year 2000. World Health Organization Technical Report Series 731. Geneva: WHO.
Xu, J., Ming, Z., Zhang, Y., Wang, P., Jing, J., & Cheng, F. (2017). Family support, discrimination, and quality of life among ART-treated HIV-infected patients: a two-year study in China. Infectious Diseases of Poverty, 6(152). DOI: 10.1186/s40249-017-0364-5
Downloads
Published
How to Cite
Issue
Section
License
Authors who publish with this journal agree to the following terms:
1) Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2) Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3) Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work.
