Open Access Research article

Using concept mapping to explore why patients become lost to follow up from an antiretroviral therapy program in the Zomba District of Malawi

Beth Rachlis1, Farah Ahmad12, Monique van Lettow13*, Adamson S Muula4, Medson Semba5 and Donald C Cole1

Author Affiliations

1 Dalla Lana School of Public Health, University of Toronto, Toronto, Canada

2 School of Health Policy and Management, York University, Toronto, Canada

3 Dignitas International, Zomba, Malawi

4 College of Medicine, University of Malawi, Blantyre, Malawi

5 District Health Office, Zomba, Malawi

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BMC Health Services Research 2013, 13:210  doi:10.1186/1472-6963-13-210

Published: 11 June 2013



Retention in antiretroviral therapy (ART) programmes remains a challenge in many settings including Malawi, in part due to high numbers of losses to follow-up. Concept Mapping (CM), a mix-method participatory approach, was used to explore why patients on ART are lost to follow-up (LTFU) by identifying: 1) factors that influence patient losses to follow-up and 2) barriers to effective and efficient tracing in Zomba, Malawi.


CM sessions (brainstorming, sorting and rating, interpretation) were conducted in urban and rural settings in Zomba, Malawi. Participants included ART patients, ART providers, Health Surveillance Assistants, and health managers from the Zomba District Health Office. In brainstorming, participants generated statements in response to “A specific reason why an individual on ART becomes lost to follow-up is…” Participants then sorted and rated the consolidated list of brainstormed items. Analysis included inductive qualitative methods for grouping of data and quantitative cluster identification to produce visual maps which were then interpreted by participants.


In total, 90 individuals brainstormed 371 statements, 64 consolidated statements were sorted (participant n = 46), and rated on importance and feasibility (participant n = 69). A nine-cluster concept map was generated and included both patient- and healthcare-related clusters such as: Stigma and Fears, Beliefs, Acceptance and Knowledge of ART, Access to ART, Poor Documentation, Social and Financial Support Issues, Health Worker Attitudes, Resources Needed for Effective Tracing, and Health Worker Issues Related to Tracing. Strategies to respond to the clusters were generated in Interpretation.


Multiple patient- and healthcare focused factors influence why patients become LTFU. Findings have implications particularly for programs with limited resources struggling with the retention of ART patients.

Concept mapping; HIV/AIDS; Antiretroviral therapy (ART); Losses to follow-up; Malawi