A Question of Life or Death - Human Rights Watch

Carrying out interviews on a sensitive issue such as HIV poses a number of
methodological and ethical challenges, particularly with children. 2 Children who
have experienced a parent’s suffering and death may be particularly susceptible to
re-traumatization and heightened stress when questioned by an unknown person. 3
For each child interviewed, we explained our work in age-appropriate terms and
sought their consent. We took great care to interview adults and children in a friendly
and sensitive manner, and ensured that the interview took place in a private setting.
Information about the HIV status of the adults and children interviewed was kept
strictly confidential. In order to protect the identities of the children interviewed, we
have replaced all their names in this report with pseudonyms. The names of the
community health workers whom we interviewed have generally been withheld in the
report.
In order to avoid false expectations of support or financial assistance, 4 we made
clear at the start of each interview that we were not able to provide direct individual
support to those who spoke with us. Instead, when we encountered situations where
people were in acute need of medical treatment or food, we tried to refer them to
local NGOs or other actors who could assist them.
Interviews were carried out in English, Swahili, Kikuyu, and Dholuo. Where
interpreting was necessary, it was usually provided by a person well known to the
interviewee, such as a community health worker or social worker.
In this report, “child” refers to anyone under the age of 18, in accordance with the
Convention on the Rights of the Child. 5 However, when referring to HIV/AIDS
statistics, we usually refer to children up to age fifteen, as all authoritative HIV/AIDS
2 National Children’s Bureau (London), “Guidelines For Research,” April 2003,
http://www.ncb.org.uk/dotpdf/open%20access%20-%20phase%201%20only/research_guidelines_200604.pdf (accessed
September 24, 2008).
3 The National Child Traumatic Stress Network (Los Angeles, CA and Durham, NC), “Understanding Child Traumatic Stress,”
2005, http://www.nctsn.org/nctsn_assets/pdfs/edu_materials/understanding_child_traumatic_stress_brochure_9-29-
05.pdf (accessed September 24, 2008).
4 Erick O. Nyambedha, “Ethical dilemmas of social science research on AIDS and orphanhood in Western Kenya,” Social
Science & Medicine, vol. 10, 2008, pp. 1-9.
5 Convention on the Rights of the Child (CRC), adopted November 20, 1989, G.A. Res. 44/25, annex, 44 U.N. GAOR Supp. (No
49) at 167, U.N. Doc. A/44/49 (1989), entered into force September 2, 1990, art. 1.
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