Living With HIV in Silence: Stigma, Disclosure and Barriers to Antiretroviral Therapy Among Women in Indonesia
Tintin Sukartini, Nursalam, Erna Dwi Wahyuni, Rio Ady Erwansyah, Achmad Masfi, Ronal Surya AdityaBackground
Although antiretroviral therapy (ART) has improved survival among people living with HIV, stigma and psychosocial barriers continue to hinder treatment adherence, particularly among women in collectivist and gendered sociocultural contexts. Women often experience HIV infection within intimate partnerships and may face compounded stigma that affects disclosure and engagement in care. However, limited qualitative research has explored how relational and family dynamics shape these experiences in Indonesia.
Aim
To explore the lived experiences of women living with HIV in relation to stigma and barriers to ART adherence and to examine how relational and family dynamics influence treatment engagement.
Methods
A qualitative descriptive study was conducted between February and July 2023 in Indonesia. Twenty‐two women living with HIV were recruited using purposive sampling. Data were collected through semistructured, in‐depth interviews and analysed using thematic analysis following Braun and Clarke’s framework. The study adhered to COREQ guidelines.
Results
Five interconnected themes emerged: (1) relational pathways of HIV transmission, (2) internalised and enacted stigma, (3) negotiating disclosure, (4) physical and psychological barriers to ART and (5) family support as a buffering mechanism. HIV infection frequently occurred within intimate partnerships, reflecting relational vulnerability. Stigma influenced emotional well‐being, disclosure decisions and treatment engagement. Medication side effects, treatment fatigue and perceived wellness contributed to adherence challenges. Family support mitigated stigma‐related distress and facilitated sustained ART adherence.
Conclusion
Women’s experiences of HIV are shaped by relational and sociocultural dynamics that influence stigma, disclosure and adherence. Gender‐sensitive, stigma‐informed and family‐inclusive nursing interventions are essential to strengthen long‐term treatment engagement among women living with HIV.