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Untung Sujianto
Departemen Ilmu Keperawatan, Fakultas Kedokteran Universitas Diponegoro
Humanities Decision Sciences, Operations Research & Management Dentistry Education Environmental Science Health Professions Immunology & microbiology Languange, Linguistic, Communication & Media Law, Crime, Criminology & Criminal Justice Medicine & Pharmacology Neuroscience Nursing Public Health Social Sciences Veterinary Other

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Exploring antiretroviral treatment discontinuation among people living with HIV in Indonesia: A qualitative study Sujianto, Untung; Amirudin, Ikhwan; Akbar, M Agung; Waluyo, Agung; Nursasi, Astuti Yuni
Belitung Nursing Journal Vol. 11 No. 6 (2025): November - December
Publisher : Belitung Raya Publisher - Belitung Raya Foundation

Show Abstract | Download Original | Original Source | Check in Google Scholar | DOI: 10.33546/bnj.4129

Abstract

Background: Discontinuation of antiretroviral therapy (ART) among people living with HIV (PLHIV) presents significant challenges for HIV care, often leading to physical deterioration, emotional distress, and social isolation. Although prior studies have addressed barriers to adherence, little is known about the experiences of PLHIV following treatment discontinuation in the Indonesian context. Objective: To explore the experiences of Indonesian PLHIV who have discontinued ART. Methods: This qualitative study employed a descriptive phenomenological approach and was conducted in three urban areas of Indonesia (Jakarta, Yogyakarta, and Bandar Lampung) between August and September 2024. Fifteen participants were purposively recruited from community-based organizations. In-depth semi-structured interviews were conducted, transcribed verbatim, and analyzed using Colaizzi’s method to identify themes and meanings in the narratives. Results: Three major themes emerged: (1) Physical and psychological consequences of ARV discontinuation, including fatigue, anxiety, and a sense of losing control; (2) Prolonged social strain and stigma, marked by loss of support and moral judgment from others; and (3) Searching for meaning and coping without treatment, including spiritual resignation and detachment from bodily control. These themes reflect the complex, multidimensional burdens PLHIV face after stopping treatment, particularly in the Indonesian context, where HIV stigma is deeply rooted in sociocultural and religious norms, and access to mental health support remains limited. Conclusion: ART discontinuation is not merely a clinical event but a deeply human experience shaped by physical decline, emotional conflict, social rejection, and existential adaptation. To improve long-term HIV care outcomes, healthcare systems must integrate psychosocial and spiritual support for individuals who disengage from treatment, encouraging re-engagement through nonjudgmental and person-centered care. For nursing practice, this study emphasizes the importance of developing empathetic communication, providing culturally sensitive counseling, and actively addressing stigma during care interactions.
Experiences of People Living with HIV and Tuberculosis amid Fear, Guilt, and Silence: A Qualitative Study Amirudin, Ikhwan; Waluyo, Agung; Sujianto, Untung; Akbar, M Agung; Nursasi, Astuti Yuni; Ayubi, Dian
Nurse Media Journal of Nursing Vol 16, No 1 (2026): (April 2026)
Publisher : Department of Nursing, Faculty of Medicine, Universitas Diponegoro

Show Abstract | Download Original | Original Source | Check in Google Scholar | DOI: 10.14710/nmjn.v16i1.79237

Abstract

Background: People living with HIV–TB (PLHIV–TB) continue to experience persistent stigma, fear, guilt, and silence that shape their psychosocial wellbeing and social interactions. HIV–TB represents a double burden that intensifies stigma and moral judgment, particularly within sociocultural and religious contexts. However, the lived experiences of PLHIV–TB in Indonesia remain insufficiently explored, despite the country’s unique cultural and religious dynamics. Understanding these contextualized experiences is essential for strengthening holistic, culturally responsive, and stigma-sensitive HIV–TB care.Purpose: This study aimed to explore experiences of PLHIV-TB amid fear, guilt, and silence within the Indonesian sociocultural context.Methods: A descriptive phenomenological design was employed, with 20 PLHIV-TB purposively selected from Lampung, Palembang, Depok, and Yogyakarta between January and June 2025. Data were collected through in-depth, semi-structured interviews lasting 45–70 minutes and analyzed using NVivo software with Colaizzi’s method. Trustworthiness was ensured through member checking, peer debriefing, and reflexivity.Results: Six themes captured the essence of participants’ experiences: (1) living under constant fear of exposure, (2) choosing silence as protection, (3) bearing the weight of guilt and moral judgment, (4) loneliness amid social disconnection, (5) struggling with faith and moral reconciliation, and (6) searching for meaning and self-acceptance. Participants’ narratives revealed a transformation from concealment and shame toward spiritual reconciliation and dignity through emotional and faith-based resilience.Conclusion: The lived experiences of people living with HIV–TB in Indonesia are shaped by intertwined dynamics of fear, guilt, and silence within a context of pervasive stigma. At the same time, some individuals demonstrate adaptive processes that reflect a complex journey from suffering to meaning-making and self-acceptance. These findings underscore the need for stigma-sensitive, psychosocial, and spiritually informed interventions to support holistic HIV–TB care.
Co-Authors - Anggorowati Abd. Rasyid Syamsuri Achmad Zulfa Juniarto Afriyanti, Yati Agung Waluyo Agustina Saputri Akbar, M. Agung Alfarisi, Naufal Raihan Amirudin, Ikhwan Anak Agung Gede Sugianthara Andrew Johan Anggrayeni Purba Ani Margawati Annisa Pratiwi, Annisa Anton Suhendro Aria Nurahman Hendra Kusuma Ariawan Soejoenoes Arief Wahyudi Jadmiko Aris Nurkohilal Aris Puji Widodo Astuti Yuni Nursasi Avin Maria Bambang Edi Warsito Basuki Supartono Billy, Roland Chandra Bagus Ropyanto Chandra Bagus Ropyanto Dewi Gayatri DEWI WIJAYANTI Dian Ayubi Dina Indrati Dyah Sulistyowati Dwi Lestari Dwi Pudjonarko Dwi Pudjonarko Dwi Retnaningsih, Dwi Dwi Saptarini, Swastika Dwi Susilawati Dwiantoro, Luky Elfira Husna, Elfira Elly Nurachmah Ethyca Sari Fatma Lestari Fauzi Ashra Fitria Handayani FITRIA HANDAYANI Fitriani, Evi Tunjung Gede Arya Bagus Arisudhana Handayani, Fitria Hani Andriyana Hardhono Susanto harun, sigit Hastaning Sakti Henni Kusuma Henni Kusuma I GEDE PUTU DARMA SUYASA Indri Khizba Dini, Indri Khizba Irena Intania Israfil, Israfil Ita Riniatsih Jerau, Emiliani Elsi Kimin, Amelia Kusman Ibrahim Liza, Fera Madya Sulisno Madya Sulisno Maksum Maksum Mardiyono Mardiyono Mardiyono, Mardiyono MARIA BINTANG Mayaut, Sevana Christina Megah Andriany Meidiana Dwidiyanti Meira Erawati Miftakhul Nizar, Angga Muchlis Achsan Udji Sofro Muflihatul Muniroh Muhamad Thohar Arifin Muhammad Nur Muhammad Nur Mukhamad Musta'in Munawaroh, Khoirunnisa’ Muniroh, Muflihatul Nana Rochana Ni Luh Putu Inca Buntari Agustini Nico L Kana Niken Safitri Dyan Kusumaningrum Nila Putri Purwandari Nining Puji Astuti NUR HASANAH Nur Kristina, Tri Nurjazuli Nurjazuli Purnomo Purnomo Purnomo Purnomo Puspa Siwi Wulandari Putri, Arcellia Farosyah Rahayu, Sisri Rendi Editya Darmawan Richal Grace Zefanya Uly Richal Grace Zefanya Uly Selano, Maria Karolina Setyaningrum, Niken Shofa Chasani Shofa Chasani Soeharyo Hadisaputro Sri Achadi Nugraheni Sri Hananto Ponco Nugroho Sri Temu Suhartini Ismail Suhartini Suhartini Suhartini Suhartini Suhartono Suharyo Hadisaputro Suharyo Hadisaputro Sukesi . Susana Widyaningsih Susana Widyaningsih Susanti, Brigitta Ayu Dwi Sutopo Patria Jati Teguh Santoso Teguh Santoso Temu, Sri Tri Nur Kristina Udji, Muchlis Achsan Visia Hevy Prasetyaningtyas Wahyu Hidayati Warih Trimulyanto Yan Wisnu Prajoko Yayan Kurniawan Yuhendri Putra Yuni Dwi Hastuti Yunie Armiyati Yunie Armiyati Yunita Yudaningsih