TY - JOUR
T1 - Bounded agency in humanitarian settings
T2 - A qualitative study of adherence to antiretroviral therapy among refugees situated in Kenya and Malaysia
AU - Mendelsohn, Joshua B.
AU - Rhodes, Tim
AU - Spiegel, Paul
AU - Schilperoord, Marian
AU - Burton, John Wagacha
AU - Balasundaram, Susheela
AU - Wong, Chunting
AU - Ross, David A.
N1 - Funding Information:
We are grateful to the study participants for their candid accounts. We thank UNHCR field offices in Kuala Lumpur, Nairobi, and Kakuma for providing critical logistical support. Dr. Christopher Lee, Dr. Anuradha Radhakrishnan, Chung Han Yang, Jayanthi Arumugam, Wong Kok Mun, Aung Zan Wai (Saw), Dr. Bosco Muhindo, Dr. Jonathan Imaana, Geoffrey Luttah, and Monica Eshikeda also provided essential support. We thank Jerry Manuel, Ngun Sui Sin, Juliana Ooi, Tan Sok Teng, Betty Akot, Abdikarim Sharif Mohamed, Habiba Abdi Adan, and Kevin Ekal Ekutan for conducting the in-depth interviews, Amrita Daftary for providing valuable feedback on an earlier draft, and Janet Mendelsohn for copy-editing the final draft. We acknowledge the National Council for Science and Technology (Kenya) and the Economic Planning Unit, Prime Minister's Department (Malaysia) for approving this work. JBM acknowledges financial support from the Canadian Institutes of Health Research (Doctoral Research Award, Priority Announcement for HIV/AIDS, Funding Reference Number 200710IDR), the Parkes Foundation PhD Grant Fund, the London School of Hygiene and Tropical Medicine Research Training Support Grant , and United Nations High Commissioner for Refugees .
Publisher Copyright:
© 2014 Elsevier Ltd.
PY - 2014/11/1
Y1 - 2014/11/1
N2 - HIV-positive refugees confront a variety of challenges in accessing and adhering to antiretroviral therapy (ART) and attaining durable viral suppression; however, there is little understanding of what these challenges are, how they are navigated, or how they may differ across humanitarian settings. We sought to document and examine accounts of the threats, barriers and facilitators experienced in relation to HIV treatment and care and to conduct comparisons across settings. We conducted semi-structured interviews among a purposive sample of 14 refugees attending a public, urban HIV clinic in Kuala Lumpur, Malaysia (July-September 2010), and 12 refugees attending a camp-based HIV clinic in Kakuma, Kenya (February-March 2011). We used framework methods and between-case comparison to analyze and interpret the data, identifying social and environmental factors that influenced adherence. The multiple issues that threatened adherence to antiretroviral therapy or precipitated actual adherence lapses clustered into three themes: "migration", "insecurity", and "resilience". The migration theme included issues related to crossing borders and integrating into treatment systems upon arrival in a host country. Challenges related to crossing borders were reported in both settings, but threats pertaining to integration into, and navigation of, a new health system were exclusive to the Malaysian setting. The insecurity theme included food insecurity, which was most commonly reported in the Kenyan setting; health systems insecurity, reported in both settings; and emotional insecurity, which was most common in the Kenyan setting. Resilient processes were reported in both settings. We drew on the concept of "bounded agency" to argue that, despite evidence of personal and community resilience, these processes were sometimes insufficient for overcoming social and environmental barriers to adherence. In general, interventions might aim to bolster individuals' range of action with targeted support that bolsters resilient processes. Specific interventions are needed to address locally-based food and health system insecurities.
AB - HIV-positive refugees confront a variety of challenges in accessing and adhering to antiretroviral therapy (ART) and attaining durable viral suppression; however, there is little understanding of what these challenges are, how they are navigated, or how they may differ across humanitarian settings. We sought to document and examine accounts of the threats, barriers and facilitators experienced in relation to HIV treatment and care and to conduct comparisons across settings. We conducted semi-structured interviews among a purposive sample of 14 refugees attending a public, urban HIV clinic in Kuala Lumpur, Malaysia (July-September 2010), and 12 refugees attending a camp-based HIV clinic in Kakuma, Kenya (February-March 2011). We used framework methods and between-case comparison to analyze and interpret the data, identifying social and environmental factors that influenced adherence. The multiple issues that threatened adherence to antiretroviral therapy or precipitated actual adherence lapses clustered into three themes: "migration", "insecurity", and "resilience". The migration theme included issues related to crossing borders and integrating into treatment systems upon arrival in a host country. Challenges related to crossing borders were reported in both settings, but threats pertaining to integration into, and navigation of, a new health system were exclusive to the Malaysian setting. The insecurity theme included food insecurity, which was most commonly reported in the Kenyan setting; health systems insecurity, reported in both settings; and emotional insecurity, which was most common in the Kenyan setting. Resilient processes were reported in both settings. We drew on the concept of "bounded agency" to argue that, despite evidence of personal and community resilience, these processes were sometimes insufficient for overcoming social and environmental barriers to adherence. In general, interventions might aim to bolster individuals' range of action with targeted support that bolsters resilient processes. Specific interventions are needed to address locally-based food and health system insecurities.
KW - Adherence
KW - Antiretroviral therapy
KW - Forced displacement
KW - Kenya
KW - Malaysia
KW - Migration
KW - Qualitative analysis
KW - Refugee
UR - http://www.scopus.com/inward/record.url?scp=84910036436&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84910036436&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2014.06.010
DO - 10.1016/j.socscimed.2014.06.010
M3 - Article
C2 - 25048975
AN - SCOPUS:84910036436
VL - 120
SP - 387
EP - 395
JO - Ethics in Science and Medicine
JF - Ethics in Science and Medicine
SN - 0277-9536
ER -