The Perspectives of Older People With HIV (OPWH) on Advance Care Planning (ACP): A Qualitative Study in Primary Care Clinics in Kuala Lumpur

Abstract

Introduction: In Malaysia, delivering advance care planning (ACP) for older people with HIV (OPWH) presents unique challenges, compounded by the country’s multiracial and multicultural beliefs. ACP allows OPWH to discuss their future care with practitioners and their appointed proxy, ensuring that future care aligns with their preferences. However, many are still unaware about ACP, and little is known about ACP in OPWH. This study aims to explore the perspectives of OPWH on ACP to tailor ACP deliverance based on their needs and values. Material and methods: Face-to-face in-depth interviews with OPWH, aged 50 years and above, were conducted from March to May 2023 in two primary care clinics in Kuala Lumpur. Data was coded and analyzed using thematic analysis. Results: Seventeen OPWH participated. Four themes emerged: normalization of HIV negates the need for ACP, view on death didacts the relevance of ACP, fear of HIV disclosure and the desire for dedicated ACP service. Some participants perceived HIV as a stable condition and regarded death as less significant than other life priorities, making ACP less favorable. On the contrary, OPWH considered ACP important when they believed that death is better than futile treatment. However, concerns about confidentiality in ACP and limited care options further contributed to their disinterest in ACP. A tailored ACP approach should address these unique challenges to enhance OPWH participation. Conclusion: ACP delivery should provide continuous services tailored to the unique needs of OPWH. Confidentiality must be upheld and communicated to OPWH throughout all ACP engagements.