Phenomenological Study of HIV Patients' Experiences of Care, Support and Treatment  in Banda Aceh City

Abstract

HIV is a chronic disease that affects not only physical health but also causes profound psychosocial stress. The Care, Support, and Treatment (CST) services are a comprehensive strategy provided to improve the quality of life of people living with HIV (PLHIV). However, the success of CST programs largely depends on how PLHIV perceive and experience these services in their daily lives. This study aims to deeply explore the lived experiences of people living with HIV in accessing CST services in Banda Aceh, focusing on their care experiences, forms of social and emotional support, and the dynamics they face in obtaining treatment. This study employed a qualitative approach with a phenomenological method. Six informants—including active PLHIV, outreach workers, CST officers, and health department staff—were selected purposively. Data were collected through in-depth interviews and observation, then analyzed thematically with the aid of NVivo 12 software to uncover the subjective meanings of their experiences. Three main themes emerged. First, the experience of receiving CST services revealed a sense of satisfaction with medical care, although some technical and emotional challenges were still present. Second, social and emotional support from family, healthcare providers, and community groups played a crucial role in strengthening psychological resilience. Third, in the treatment process, informants encountered challenges such as limited access, therapy side effects, and concerns about stigma, yet they demonstrated strong commitment to treatment adherence. This study emphasizes the need for a more humane, empathetic, and holistic approach to CST services. Sustainable social support, effective communication, and assurance of confidentiality are key elements in improving the quality of life of people living with HIV.

Keywords:

HIV, Lived Experiences, Care, Support, Treatment, Phenomenology

References

Adriansyah, AA, & Firdausi, NJ (2018). Trends in new cases of human immunodeficiency virus (HIV) infection in Indonesia in the period 2012–2016. Medical and Health Science Journal, 1(2).https://doi.org/10.33086/MHSJ.V1I2.594

Alase, A. O. (2017). The interpretative phenomenological analysis (IPA): A guide to a good qualitative research approach. International Journal of Education and Literacy Studies, 5(2), 9–19.https://doi.org/10.7575/AIAC.IJELS.V.5N.2P.9

Ayubbana, S., Ludiana, L., Fitri, NL, & Sari, SA (2022). Adolescents infected with HIV/AIDS in Indonesia (Analysis of Publication Data from the 2017 SDKI). Holistik, 16(2), 142–148.https://doi.org/10.33024/hjk.v16i2.5336

Balatif, R. (2020). HIV Infection: What should we know?, 2(1), 01–16.https://doi.org/10.32734/JETROMI.V2I1.2038

Beichler, H., Grabovac, I., & Dorner, T. (2023). Integrated care as a model for interprofessional disease management and the benefits for people living with HIV/AIDS. International Journal of Environmental Research and Public Health, 20(4), 3374.https://doi.org/10.3390/ijerph20043374

Berkman, L. F., & Glass, T. (2000). Social integration, social networks, social support, and health. In Social Epidemiology (pp. 137–173).

CDC. (2020). Centers for Disease Control and Prevention (CDC).https://www.cdc.gov/dpdx/strongyloidiasis/index.html

Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry and research design: Choosing among five approaches (4th ed.). Sage Publications.

Aceh Health Office. (2024). Aceh health profile 2023. Banda Aceh: P2P Division of Aceh Health Office.

Aceh Health Service. (2023). Report on HIV/AIDS cases in Aceh.

Banda Aceh City Health Office. (2023). Report on HIV/AIDS cases in Banda Aceh City.

Banda Aceh City Health Office. (2024). Report on HIV/AIDS cases in Banda Aceh City.

Frankl, V. E. (2006). Man's search for meaning. Beacon Press.

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster.

He, S.-P., Porquier, R., Rombach, W., & Markou, N. (2023). The e-HIV SUFFERER application as an effort to increase the coverage of “open status” of people with HIV/AIDS. Poltekita, 4(2), 422–434.https://doi.org/10.33860/pjpm.v4i2.1684

Herdiansyah, H. (2010). Qualitative research methodology for social sciences. Jakarta: Salemba Humanika.

Husserl, E. (1970). The crisis of European sciences and transcendental phenomenology. Evanston, IL: Northwestern University Press..

Ministry of Health of the Republic of Indonesia. (2020). National guidelines for handling HIV and AIDS infections. Jakarta: Ministry of Health of the Republic of Indonesia

Ministry of Health of the Republic of Indonesia. (2021). National strategy for combating HIV and AIDS 2020–2024. Jakarta: Ministry of Health of the Republic of Indonesia.

Ministry of Health of the Republic of Indonesia. (2009). Report on the estimation of the adult population at risk of HIV infection in 2009. Jakarta: Ministry of Health of the Republic of Indonesia.

Ministry of Health of the Republic of Indonesia. (2014). Regulation of the Minister of Health of the Republic of Indonesia No. 74 of 2014. Jakarta: Ministry of Health of the Republic of Indonesia.

Ministry of Health of the Republic of Indonesia. (2016). Regulation of the Minister of Health of the Republic of Indonesia No. 25 of 2016. Jakarta: Ministry of Health of the Republic of Indonesia.

Ministry of Health of the Republic of Indonesia. (2017). Program for controlling the level of AIDS and STIs in health facilities in the Republic of Indonesia. Jakarta: Ministry of Health of the Republic of Indonesia.

AIDS Policy in Indonesia. (2017). The Development of HIV and AIDS in Indonesia (1987–2013). Jakarta.

Li, L., Liang, L. J., Lee, S. J., & Jiraphongsa, C. (2017). The role of social support in treatment adherence and quality of life among people living with HIV in Thailand. AIDS Patient Care and STDs, 31(1), 1–6.

Mulqueeny, D. M., & Taylor, M. (2022). Patient-centred care: Reality or rhetoric—patients' experiences at ARV clinics located in public hospitals in KwaZulu-Natal, South Africa. AIDS Research and Therapy, 19(1).https://doi.org/10.1186/s12981-022-00463-2

Nugroho, A., & Wibowo, IR (2023). Breaking the stigma: Increasing comprehensive HIV knowledge to end discrimination against people living with HIV. Indonesian Journal of Community and Occupational Medicine, 2(3), 120–123.https://doi.org/10.53773/ijcom.v2i3.76.120-3

Nyblade, L., et al. (2018). Stigma in health facilities: Why it matters and how we can change it. BMC Medicine, 17(1), 25.

Patel, P., Raizes, E., & Broyles, L.N. (2020). Human immunodeficiency virus infection. In Elsevier (pp. 232–266).https://doi.org/10.1016/B978-0-323-55512-8.00031-4

Rahayuni, NWS, Merati, KTP, & Wirawan, DN (2019). Emotional support is the only social support associated with the quality of life of people living with HIV. Public Health and Preventive Medicine Archives, 7(1), 38.https://doi.org/10.15562/PHPMA.V7I1.192

Riani, EN, Ambarwati, D., & Wijaya, DAP (2022). Implementation of PDP services in primary health services in Banyumas Regency. NERSMID: Journal of Nursing and Midwifery, 5(1), 123–133.

Rosenstock, I. M. (1974). The health belief model and preventive health behavior. Health Education Monographs, 2(4), 354–386.

Rotheram-Borus, M. J., Swendeman, D., & Chovnick, G. (2009). The past, present, and future of HIV prevention: Integrating behavioral, biomedical, and structural intervention strategies. Annual Review of Clinical Psychology, 5(1), 143–167.

Senyurek, G., Kavas, M. V., & Ulman, Y. I. (2021). Lived experiences of people living with HIV: A descriptive qualitative analysis. BMC Public Health, 21(1), 904.

Sukmawati, C., Sihombing, M., & Purwoko, A. (2021). Health services for HIV and AIDS in North Aceh District, Indonesia. In Proceedings of the 6th International Conference on Social and Political Sciences (pp. 194–203). https://doi.org/10.2991/ASSEHR.K.210125.033

Talumewo, OC, Mantjoro, EM, & Kalesaran, AF (2019). Factors related to compliance of HIV PATIENTS in undergoing antiretroviral therapy. KESMAS: Journal of Public Health, Sam Ratulangi University, 8(7).

UNAIDS. (2021). Confronting inequalities: Lessons for pandemic responses from 40 years of AIDS. Geneva: Joint United Nations Program on HIV/AIDS.

UNAIDS. (2022). Global AIDS update 2022: In danger. Geneva: Joint United Nations Program on HIV/AIDS.

Vuletić, S., & Kern, J. (2020). Phenomenology in public health: Manual.

Wahyuni, E., & Nurwati, I. (2022). Phenomenological study: Experiences of HIV PATIENTS in peer group mentoring programs in Surakarta. ASJN, 3(1), 12–18. https://doi.org/10.30787/asjn.v3i1.890

Welly, SBP (2021). The effects of logotherapy on depression in people with HIV/AIDS. World Journal of Research and Reviews, 12(1). https://doi.org/10.31871/WJRR.12.1.8

WHO. (2010). AIDS and sexually transmitted diseases.

WHO. (2021). Global number of people living with HIV databooks.

Zhou, G., Teng, F., Wang, Y., & Li, X. (2019). Barriers and facilitators to antiretroviral therapy adherence among people living with HIV in China: A systematic review. AIDS and Behavior, 23(3), 689–705.