Patient Experiences In Antiretroviral Therapy Programmes In Kwazulu-Natal, South Africa

This report presents the methods and findings of a qualitative study of the experiences of patients taking medication for HIV infection as part of an antiretroviral therapy (ART) programme in five sites in KwaZulu-Natal (KZN), South Africa. The study, known as the ADHERE Project, was designed by MEASURE Evaluation and implemented in collaboration with Health Systems Trust to provide information to the KwaZulu-Natal Department of Health for use in expanding and improving their ART services.

The ADHERE Project focused on taking a patient-centered perspective on factors that either enhanced or hindered an individuals ability to attain desired levels of adherence to antiretroviral therapy, and to participate in treatment programs over the long-haul. The work focused first on the development and testing of a data collection instrument that could provide information about patient experience in taking medication for HIV infection, beginning with the issue of how disclosure of HIV related to adherence. The instrument was to draw on methods of study that focus on the participant in order to capture the complex experiences of patients with ART, their treatment supporters, and health care providers (HCPs). The instrument would be used to generate data to inform programme managers about the strengths and weaknesses of their ART adherence support services in an effort to assist in programme improvement. A first round of data collection took place among patients attending one urban hospital in Durban.

In a second round of data collection in five sites operated by the provincial government of KwaZulu-Natal, MEASURE Evaluation expanded the goals of the research to include not only the formulation of an instrument to collect information about the ART programme, but also to better understand patient experiences in taking antiretrovirals (ARVs). Interest in disclosure remained, but disclosure became one of a number of topics of interest. Therefore, in this second round of research just completed, ADHERE had both a methodological and a strategic objective. The methodological objective was to develop an instrument that could be used by health care facilities directed by the Department of Health to collect information on programme operation related to patients taking ARVs. The strategic objective of ADHERE was to understand the strategies that patients develop in order to achieve high adherence. Some strategies fail while others succeed, and this study was interested in any strategy that patients have tried for maintaining adherence.

This study is qualitative in that it collected narratives of patient experiences in taking ARVs and examined the social context of taking ARVs. The research also included semi-structured interviews with HCPs who provided ART services. The study was designed and implemented to understand how ART patients managed to remain on ARVs for a long period of time, as well as how and why some patients miss doses from time to time and still others stop altogether. The results identify the information most essential to understanding how well an ART programme is functioning and ways in which it could be improved.