More than 5.4 million Syrian refugees are registered in countries surrounding Syria, including an estimated 1.5m in Lebanon.+UNICEF, Syria Crisis: 2017 Humanitarian Results (https://www.unicef.org/appeals/files/UNICEF_Syria_Crisis_Humanitarian_Situation_Report_Year_End_2017.pdf). Psychological and social distress among refugees is common, resulting in a wide range of emotional, cognitive, physical and behavioural problems.+G. Hassan et al., Culture, Context and the Mental Health and Psychosocial Wellbeing of Syrians: A Review for Mental Health and Psychosocial Support Staff Working with Syrians Affected by Armed Conflict (Geneva: UNHCR, 2015); E. G. Karam et al., ‘Outcome of Depression and Anxiety after War: A Prospective Epidemiologic Study of Children and Adolescents’, J Trauma Stress 27(2), 2014. High-quality research on the mental health needs of Syrian refugees should play an important role in planning and providing services, yet conducting mental health research to a high standard in a refugee setting is particularly challenging. This article describes two research studies with Syrian refugees in the Beqaa region of Lebanon, setting out some of the challenges faced and the lessons learned in the process of conducting the research.
The BIOPATH study
BIOPATH – Biological Pathways of Risk and Resilience in Syrian Refugee Children – aims to understand how environmental and biological factors interact to influence the extent to which children develop mental health problems or show resilience following war and displacement. This National Institutes of Health (NIH)-funded research is being led by academic partners in the UK and Lebanon (Queen Mary University of London (QMUL) and the Institute for Development, Research, Advocacy and Applied Care (IDRAAC)), with Médecins du Monde (MdM) as the fieldwork partner.
Researchers interviewed 1,600 refugee children and their primary caregivers about children’s wellbeing and symptoms of common mental health problems, such as depression and PTSD. We also measured the risk and protective factors that might affect mental health, ranging from exposure to war events and the quality of their living conditions to levels of social support and access to education. Saliva and hair samples were collected to measure biological factors such as genetic variation and stress hormones. Around 1,000 of these families will be followed up after one year to study changes in children’s mental health over time.
The t-CETA study
The Common Elements Treatment Approach (CETA)+L. K. Murray et al., ‘Building Capacity in Mental Health Interventions in Low Resource Countries: An Apprenticeship Model for Training Local Providers’, Int J Ment Health Syst 5(1), 2011. is a psychological treatment designed for low resource settings. It can be delivered by trained lay people under close supervision. The t-CETA study aims to adapt the approach so that it can be delivered over the telephone, and then test its effectiveness in a randomised controlled trial. Delivering CETA over the phone has the potential to reach a much greater number of children than is possible with face-to-face treatment. The study is funded by Elrha+This study is supported by Elrha’s Research for Health in Humanitarian Crises (R2HC) programme, which aims to improve health outcomes by strengthening the evidence base for public health interventions in humanitarian crises. R2HC is funded equally by the Wellcome Trust and the UK government (DFID). Visit www.elrha.org/r2hc for more information about Elrha’s work to improve humanitarian outcomes through research, innovation, and partnership. and involves academic partners in the UK (QMUL), Lebanon (American University of Beirut), the United States (Johns Hopkins University) and Germany (Medical School Hamburg), working with MdM in Lebanon.
Challenges faced and lessons learned
Close partnerships between researchers and practitioners in the field are key to high-quality research. They can also be challenging. NGOs’ lack of experience in implementing research, and academics’ lack of connection to the community and limited knowledge of operational procedures in the field, can result in significant differences in expectations and institutional culture. During the course of setting up the BIOPATH and t-CETA projects, we deepened the connections between institutions by jointly managing core research staff. Local study coordinators were employed specifically for research activities with MdM in Lebanon, with significant input in recruitment and line management from academic partners, and a joint recruitment process enabled the selection of candidates with skills relevant to both institutional settings. The study coordinator at QMUL in London is in daily contact with the Lebanon-based coordinators, facilitating joint planning and problem-solving during fieldwork and acting as the link between academic partners and NGO staff. This helps NGO staff understand the demands of the research, and academic partners understand the constraints of fieldwork.
Planning and budgeting
Planning and budgeting for both studies was done before research staff were recruited and in post. This made developing plans more difficult and necessitated revisions as new challenges emerged. For example, it only became clear when the BIOPATH fieldwork coordinator began planning field visits in preparation for the research that formal approval from the Ministry of Defence (MOD) was required in order to conduct research in refugee settlements. As a result, the preparation phase of the study had to be extended while we gained these additional approvals. Likewise, while academic staff planned staffing and timelines for the research based on estimates of how long it would take to complete assessments, these had to be recalculated to reflect the time it took for field staff to travel to areas where data collection would take place and pilot-test assessments. For future research collaborations we aim to involve staff at all levels across different departments of the partner organisations from the earliest stages of conceptualisation and planning. This should help ensure that plans are feasible, that setup and support costs are anticipated and that research activities are planned in a way that minimises the impact on the ongoing activities of the NGO.
Approvals and support
There are many challenges inherent to working in a humanitarian setting, including ethical concerns about conducting research with a vulnerable group, ensuring that the research is beneficial to participants and securing approval for the research. Prior to the fieldwork the study was reviewed by the sponsoring UK university (QMUL), ethical approval was obtained from a local Lebanese university, government approvals were obtained from the Ministry of Public Health (in consultation with the Lebanese National Consultative Committee on Ethics) and the MOD, and clearance was sought from army intelligence units local to the settlements where the research would take place. Each municipality in the working area and each community leader in the settlements was visited by the research coordinator prior to the research to explain the study in detail, and to find out more about the community and their concerns.+In the Syrian refugee context in Lebanon, a community leader (also known as chawich) is usually selected by the members of that community to take the lead in meeting the needs of residents of the settlement, such as paying for land rental, negotiating prices with landlords, meeting with local authorities, representing the settlements and coordinating with NGOs. This process took significantly longer than expected, and for future studies we will share plans with the relevant government departments at the earliest stage – before seeking funding – in order to anticipate and address ethical or security concerns in a timely manner.
Reliable and valid measures are one of the most important aspects of any research study. Measures must be adapted to the culture, educational and literacy levels of the target population, while also allowing for comparisons with other contexts. A review of the existing literature identified measures that seemed promising. For example, the Screen for Child Anxiety Related Emotional Disorders (SCARED)+N. Hariz et al., ‘Reliability and Validity of the Arabic Screen for Child Anxiety Related Emotional Disorders (SCARED) in a Clinical Sample’, Psychiatry Research 209, 2013. and the WHO-5 Well-Being Index (WHO-5)+P. Bech, Clinical Psychometrics (Oxford: Wiley-Blackwell, 2012); C. Winther Topp et al., ‘The WHO-5 Well-Being Index: A Systematic Review of the Literature’, Psychother. Psychosom 84, 2015. had both been translated into Arabic and validated in children or adults in Lebanon. The Lifespan Self-Esteem Scale+M. A. Harris, M. B. Donnellan and K. H. Trzesniewski, ‘The Lifespan Self-Esteem Scale: Initial Validation of a New Measure of Global Self-Esteem’, Journal of Personality Assessment 100(1), 2018. had not been used in Arab countries, but worked well with American children, uses language suitable for children, and includes pictures of sad, neutral and happy faces to help children frame their responses. Measures were independently forward and back translated by bilingual psychology students in Lebanon, and reviewed and revised by Syrian and Lebanese clinicians and mental health and public health experts. Focus group discussions with Syrian refugees (mothers, fathers and children/teenagers) from settlements in Beqaa were carried out to determine whether measures were easily understood, culturally sensitive and appropriate. Pilot work with over 250 Syrian families evaluated and refined the measures, and close monitoring during data collection and exit interviews with interviewers were used to gain information on how each measure was received and understood by participants.
The pilot testing revealed problems with a number of existing measures. For example, we aimed to measure two closely related aspects of coping, self-efficacy and locus of control. Self-efficacy measures the strength of a person’s belief in their ability to deal with difficult situations, while locus of control relates to the extent to which a person attributes success or failure to internal or external causes. Pilot testing with Syrian refugees showed that the measure of self-efficacy worked well; the questions made sense to people and the scale showed excellent psychometric properties. However, the questions in the locus of control measure did not make sense to the study participants and the scale performed very poorly. Participants explained that success was down to God’s will, rather than hard work or luck. The different cultural and religious framework used to understand why things happen means that the concept of locus of control does not help explain why some people cope better than others. Therefore, we decided to drop this measure from the research.
Qualitative approaches were used to check whether each question was understandable and appropriate to the culture of the community and the context of informal settlements. For example, the measure of coping strategies asked whether children would ride a bike or skateboard as a way of releasing emotions, but both are extremely rare in this context. Another measure asked how often children attended religious meetings. However, young girls do not necessarily attend mosque, so this question did not reflect religious belief among girls. In some cases translation into Arabic unavoidably changed the meaning of a question. For example, a question that asked about having a ‘rich, complex inner life’ was conveyed as a ‘rich, complicated inner life’, which did not make sense to participants. We removed or rephrased any questions that caused problems in the pilot study. We also used quantitative data analysis to reduce the length of longer questionnaires. Where there were no existing measures we developed new ones, including a measure of the quality of the refugee environment (Perceived Refugee Environment Index (PREI)), a measure of children’s aspirations and expectations about the future (Future Aspirations and Plans (FAP)) and a measure of access to mental health services (Mental health Service Use and Needs (MhSUN)).
Challenges involved in the actual conduct of the research included adverse weather, security concerns and transport issues, as well as pressure to address staff and refugees’ concerns, needs and requests. Conditions in the refugee settlements vary dramatically: some are muddy while others are well constructed and designed; some have a clear division between shelters and roads, while in others shelters are randomly scattered and there may not be passage for cars; some have proper waste management and sanitation while others do not. Almost all refugees expected basic needs assistance when first introduced to the research project, and the team had to balance attending to these needs and taking details for referrals with collecting data for the research. We tried to anticipate the challenges that might be faced, developing a contingency plan and creating and managing a reporting system for fieldworkers. A WhatsApp group was created for communication about security issues, including MdM’s security focal point, the logistics officer, the fieldwork team leaders and the fieldwork coordinator. On the rare occasions when security issues arose, this was immediately communicated to the group and feedback provided.
Data management and quality assurance
Finally, monitoring and maintaining the quality of the data being collected is of utmost importance. When data collection is taking place in remote locations, and when many interviews are being collected by a large team each day, this can be extremely challenging, and there is a risk that substantial amounts of data are collected before problems become apparent. We took a number of steps to ensure high-quality data collection. Before the field research began, intensive technical training was conducted with field team members covering data and sample collection and storage, as well as generic skills such as communication with adults and children, ethics and personal conduct and security. Training was conducted in Arabic, and all documentation was translated. Interview data was collected through tablets and uploaded to a secure website every day. Data processing was automated so that data could be exported, processed and evaluated quickly by the academic team in London. This made it possible to detect errors in data entry and provide feedback promptly to the fieldwork coordinator.
Achieving high-quality research in Beqaa has proved challenging, but it is possible when academic and NGO partners work closely together and develop systematic and innovative approaches to data collection. One of the most important planning recommendations is to closely communicate day-today with fieldworkers and logistics and security staff at the NGO, as well as with the community. While it might be burdensome, time-consuming and complicated, having the feedback of field team members and the community while drafting research plans is likely to save a great deal of time and effort later. It is also crucial to keep in mind that challenges and obstacles, especially during the data collection phase, are inevitable. As such, having a dedicated, well-trained team and good communication between academic and NGO partners will build a solid foundation that will increase the chances of success.
Patricia Moghames works for Médecins du Monde (MdM) France in Lebanon. She is the Field Work Coordinator for the BIOPATH and t-CETA research studies. Fiona McEwen is a Postdoctoral Researcher in Developmental Psychology at the Department of Biological and Experimental Psychology at Queen Mary University of London, and is the Study Coordinator for the BIOPATH and t-CETA studies. Michael Pluess is an Associate Professor in Developmental Psychology at the Department of Biological and Experimental Psychology at Queen Mary University of London. He is the Principal Investigator for the BIOPATH and t-CETA studies.