In January 2018, the Women’s Refugee Commission (WRC) launched the Sexual Violence Project, a three-year initiative focusing on sexual violence against displaced men and boys,[1] including gay, bisexual, transgender and others with diverse sexual orientation and gender identity and/or expression (GBT+). The project includes, among other activities, undertaking applied exploratory research among refugees in Bangladesh, Italy and Kenya. Given the sensitivity of the research topic, the vulnerability of the research participants and the potential for harm, addressing safety and ethical issues is paramount.
A first step in undertaking research that directly involves people is to secure ethics approval from an appropriate body, yet academic and governmental ethics review boards are frequently unfamiliar with, and may be resistant to approving, research in humanitarian settings. Further, humanitarian actors frequently grapple with limited internal research capacity, limited and/or restricted funding, and time pressures due to donor requirements and pressing humanitarian needs. Pursuing ethics approval for research may be perceived as time-consuming, too challenging or unnecessary. However, this step is essential, particularly given the absence of functioning protection systems in many humanitarian settings. If ethics approval is secured from an institution outside the country of study, approval should also be sought from a national Institutional Review Board (IRB) or other local accredited body. (In settings with corrupt, dysfunctional or nonexistent ethics boards, securing local approval may not be viable, and alternatives can be considered.)
For example, for the WRC Sexual Violence Project, we secured ethics approval from the University of New South Wales in Australia and KEMRI, a national research body, in Kenya. However, different barriers impeded obtaining ethics approval in Italy and Bangladesh, including the paucity of IRBs that review non-medical research, limited project funding, and time constraints. In lieu of a formal review process, we established national reference groups with local researchers and protection experts to review the research protocol and tools, provide guidance on cultural and political issues, and generally advise on ethical concerns. In Italy, although we were informed that the University of Palermo does not have a formal IRB for social science research, we asked the Department of Psychological, Pedagogical and Education Services to informally review and provide written approval of the research protocol. In addition, we convened a global advisory board with 12 technical experts to review the protocol and tools and provide input on ethical considerations.
Adherence to ethical guidelines
The World Health Organization’s ethical guidelines[2] state that interviewing survivors of sexual violence should only be undertaken as a last resort. Interviews with survivors were not deemed necessary for achieving our research aims, or ethical given the vulnerability of the participants and the potential for adverse impacts; second- and third-hand accounts of sexual violence are sufficient. However, despite emphasising to participants that they do not need to share personal experiences of violence, some do spontaneously disclose such experiences, including in focus groups with other community members.
In order to direct survivors to assistance, we developed participant information sheets (translated into relevant languages) which include local referral points for health and psychosocial care and which were vetted by gender-based violence, protection and/or health specialists. These information sheets are offered to all participants, regardless of whether they have disclosed personal experiences of violence or not. The term ‘sexual violence’ is omitted from the form in order to promote confidentiality and minimise stigmatisation and any other potential negative repercussions. An existing distress protocol[3] was also adapted to assist researchers to identify indications of distress during an interview or focus group and respond accordingly. Informed consent is requested at the beginning of the focus group and we also check with participants throughout the discussion to emphasise their right to skip questions or leave, without repercussions.
Ethical considerations involving adolescents
According to WHO’s ethical guidelines, additional safeguards must be put in place if research directly involves children. Capturing adolescents’ inputs is important to understand the nature, characteristics and impacts of sexual violence against boys as well as to identify barriers to and aspects that promote service uptake. To avoid reproducing the shortcomings of initial research on violence against women, which largely omitted adolescent girls, we included additional ethical considerations in the research process to ensure adolescent participants (aged 15–17) could be included.
Prior to data collection, informed consent is sought from the parents of adolescent participants; among unaccompanied minors, consent is sought from an institutional guardian such as a social worker or psychologist. A guardian, social worker, psychologist and/or gender-based violence expert is present during all focus groups with unaccompanied minors. Vulnerable adolescents with limited protection and support – such as unaccompanied minors living in informal settlements – are excluded from the sample.
As the project advances, we are reflecting on how to better ethically engage adolescent participants. In addition to asking adolescent refugees to provide examples of refusing consent, we found it effective to provide a variety of verbal examples of declining consent, refusing answers and deciding to withdraw, so adolescents had that language at their fingertips; indeed, some adolescents used this language to skip questions or leave during the discussion.
Translated summaries of the research are shared with key informants and operational research partners for local distribution to ensure refugees and local service providers are informed of findings and recommendations. In collaboration with UNICEF Italy, we developed an adolescent-friendly summary of the research findings, using appropriate language and graphics.
Navigating ethics and emotions
We feel a deep ethical responsibility to ensure that participants’ voices and experiences are responsibly documented and shared. Many ask us to “tell people what happened to me so they will do something about it”. Research participants recount tales of terrible violence and loss, and some shed tears. Service providers may also display emotion. In one setting, a provider wept while recounting the story of a refugee boy who had been disfigured for smiling too much. This can take an emotional toll on even the most seasoned aid worker, and re-engaging with accounts of violence and injustice through cleaning, coding and analysing the data, in addition to writing up the findings, can also cause distress.
As such, we work to prioritise self-care practices, including limiting the time spent engaging with difficult data and cultivating positive support networks outside work. We are also developing a training module with UNICEF to support cultural mediators (interpreters) to better respond to disclosures of sexual violence and reduce vicarious traumatisation, while in Bangladesh we are supporting a project with Legal Action Worldwide to develop the capacity of Rohingya focal points to better link male and third-gender survivors with services, which includes a self-care component for the focal points.
Ensuring accountability to women and girls
As more attention is given to sexual violence against men and boys, accountability to women and girls and promoting gender equality need to be prioritised. This means, for example, ensuring that programmes and advocacy for male survivors do not reinforce harmful patriarchal norms or practices, or erode resources or attention from women and girls. Dedicated spaces, funding and programmes for women and girls in the humanitarian sector are recent, hard-won achievements but the increased global attention and advocacy around women and girls have not translated into consistent funding or systematic service provision on the ground. We work to dispel the myth that post sexual violence services are widely available for women and girls but not for men and boys. Across humanitarian settings, these services frequently require strengthening for all survivors. As such, we do not advocate for attention to and services for male survivors alone, but for comprehensive, complementary services that meet the needs of all survivors of sexual violence – female, male and those with diverse sexual orientation and gender expression or identity.
Reflections
Throughout the research process, project staff and advisory group members have reflected on how ethical considerations and accountability could have been improved within the project. In particular:
- Additional inclusion of representatives from local women’s and GBT+ groups and/or refugees on the national reference committees could have further strengthened accountability to women, girls and GBT+ persons. Too often, IRBs are composed of academics and experts from the Global North with limited, if any, inclusion of individuals who can articulate the perspective of the research participants.
- Although research findings are shared with local service providers, further follow-up could be undertaken to promote wider dissemination among the refugee populations.
- The resilience of the refugee research participants who share their stories with us is remarkable. We wonder, however, whether these participants encounter adverse emotional or social impacts after the focus group discussion, and what additional measures can be undertaken to enhance their well-being. Through the second phase of the project we will maintain a focus on supporting survivors to access good-quality mental health care and psychosocial support, among other services.
Sarah Chynoweth svproject@wrcommission.org
Founder and Director/Consultant, Sexual Violence Project, Women’s Refugee Commission www.womensrefugeecommission.org
Sarah Martin smartindc@gmail.com
Independent gender-based violence expert and member of the Sexual Violence Project’s Global Advisory Committee
[1] The study focuses on individuals who identify as men or boys or were once designated as such. We use the term ‘men and boys’ for ease of reading and acknowledge that it does not capture many persons of diverse sexual orientation and gender identity and/or expression who are included in the scope of the study.
[2] WHO (2007) Ethical and safety recommendations for researching, documenting and monitoring sexual violence in emergencies www.who.int/gender/documents/OMS_Ethics&Safety10Aug07.pdf
[3] Burke Draucker C, Martsolf D S and Poole C (2009) ‘Developing Distress Protocols for Research on Sensitive Topics’, Archives of Psychiatric Nursing 23:5 www.sciencedirect.com/science/article/pii/S0883941708001799?via%3Dihub