Exploring the involvement of HIV patients in person-centred care: The case of Nancholi Youth Organization (NAYO) in Blantyre, Malawi

Abstract

This research report explored the involvement of HIV patients in person-centred care (PCC). PCC is the collaboration between healthcare providers, patients, and their support system to achieve the desired goals of quality treatment and care. PCC has been implemented in high- income countries where definitions, theories, and frameworks have been made. The literature review focuses on six major concepts namely PCC, expert patient, Greater Involvement of People with HIV/AIDS (GIPA), community-based care, patient support system, and stigma. PCC, expert patient and GIPA are core to understanding community-based initiatives and the need to implement PCC and community-based care. Community care, patient support systems and stigma drive person-centred care implementation, especially in low-income countries. The main research question was: What is the involvement of HIV patients in the Malawian Nancholi Youth Organization (NAYO) Programmes in Blantyre? In its methodological considerations, the study used the following research approaches: (1) A qualitative design to explore the involvement of HIV patients in NAYO Programmes; (2) A purposive sampling technique in the identification of seven respondents from NAYO staff and five community volunteers; (3) A stratified sampling technique in recruiting 11 HIV patients on the first line of HIV treatment; (4) Semi-structured interviews to gather information from NAYO staff members, HIV patients, and community volunteers; (5) Adopted the participant observation method in observing interactions between patients and healthcare providers; (6) Thematic analysis was adopted to draw themes based on research-specific questions and NAYO programmes. Findings reveal that NAYO uses a community-based approach for the implementation of its services and much of the involvement of patients is on a community level. NAYO Community volunteers facilitate and coordinate the collaboration between patients and healthcare providers. NAYO relies on community volunteers to implement its programmes. Finally, the research revealed that patients’ support system includes family relations, friends, church members and community leaders who provide psychosocial-moral support. Felt and enacted stigma are barriers to the implementation of community-centred care. Financing programmes and services is a major challenge for NAYO in the implementation of its activities.