informed consent, ethics review, individual and collective risk, mental health, reproductive health, community-based research, community engagement, refugees, vulnerability
In 2017, a large group of Rohingya refugees departed from Myanmar to Bangladesh and other countries in the region after having endured many years of oppression and human rights violations. As of August 2021, 102,990 Rohingya refugees were displaced to Malaysia, 32% of which were women.1 However, the refugees did not have full legal rights and thus had restricted access to public health care and education.2 Mental health challenges were common among the population, including post-traumatic stress disorder, anxiety, depression, and suicidal ideation.3 Women faced additional risks, including rape, sexual abuse, and violence—made worse when access to reproductive health services such as prenatal care and childbirth services were unavailable.4
In 2018, a nonprofit organization that was set up to provide translation services for humanitarian purposes surveyed 407 of the refugees to better understand their communication needs. The results revealed that they only spoke their native language, with a majority unable to read or write other languages.5 Further, although two-thirds preferred written communication in their native language, there was no universally accepted script. The survey also found conservative religious and cultural values, with gender-specific norms and taboos.6 For example, menstruation and childbirth were prohibited to be openly discussed, and colostrum from breast milk is considered “dirty” and harmful to new-borns.6
A researcher designed a study to provide a broad picture of the challenges faced by women in this group of refugees, in particular their awareness and practices regarding reproductive and mental health. The research was intended to inform development of an educational family planning toolkit. It was to be conducted in a mobile clinic run by a local nongovernmental organization and had three phases. The first phase, a cross-sectional descriptive study, used the World Health Organization United Nations High Commissioner for Refugees (WHO-UNHCR) Assessment Schedule of Serious Symptoms in Humanitarian Settings (WASSS) field test version toolkit to identify issues related to mental and reproductive health. The toolkit provides a rapid assessment of the mental health and psychosocial needs and resources in humanitarian settings. The second phase involved development and validation of a questionnaire about knowledge, attitudes, and practices related to family planning. The third phase involved development and impact assessment of an educational toolkit on family planning. The research team relied on the expertise of trained translators of a Rohingya origin who signed a nondisclosure agreement.
The questionnaire included questions on reproductive health related to menstruation, pregnancy, sexual health, and sexual abuse. Questions about mental health aimed to surface a range of mental health issues as well as identify impaired function.
Questions
What ethical considerations need to be accounted for in conducting this study?
What responsibilities do the researchers have toward research participants while conducting the study and reviewing data? What about to the wider refugee population?
What is the best way to obtain informed consent from participants in this study in which most participants are conversant only in their native language?
Is a nondisclosure agreement adequate to address all concerns that may exist pertaining to potential links between translators and participants? What measures can researchers take to ensure the confidentiality and safety of participants?
Does communication between participants and translators have any impact on the study results? For example, would participants be comfortable in answering questions they consider taboo or sensitive?
What sort(s) of review committees should review and monitor this research? How might the unique interests of the refugee community be adequately represented in this process?
