Eureka Build-a-thon

Health and Life Study of Afghan Refugees in California, Using an online RDS platform

  • TEAM LEADER Ali Mirzazadeh MD MPD PhD, Associate Professor of Epidemiology and Biostatistics, University of California San Francisco.
  • TEAM LEADER CONTACT Ali.Mirzazadeh@ucsf.edu - 4158664234
  • TEAM MEMBERS

1-    Seyed Sina Neshat MD, Postdoc Researcher, Department of Epidemiology and Biostatistics, University of California San Francisco.

2-    Sima Naderi, MPH, MS, PhD Student, Global Health Science, University of California San Francisco.

3-    Eva Raphael, MD, MPH Assistant Professor in Epidemiology and Biostatistics

4-    Carol Camlin, MPH, PhD Professor of Ob/Gyn

5-    Mohammad Sediq Hazratzai, MD, MPH Afghan senior scientist who is a global affiliated faculty at IGHS

6-    Asiya Yama – Non-researcher community member

  • DEPARTMENT
    Epidemiology and Biostatistics
  • STUDY Name
    Health and Life Study of Afghan Refugees in California
  • RESEARCH QUESTION
    What is the Health and Life vulnerabilities of Afghan Refugees in California? 
  • SPECIFIC AIMS (1/2 page)

 

Study to Monitor Health and Life Vulnerabilities of Afghan Refugees

 

Objective:

To monitor the health, socio-demographic, and life vulnerabilities of recently settled Afghan refugees in the Sacramento area through a phone or web-based respondent-driven sampling (RDS) survey and in-depth interviews.

 

1. Cohort Study Development and Pilot-testing:

 

Population: 50 Afghan households (~100 individuals) recently settled in Sacramento.

 

Methodology:

 

Phone or web-based RDS survey.

Measurement of socio-demographic, life, and health vulnerabilities.

Examination of past and ongoing first or second-hand exposure to conflict.

Duration: 6 months follow-up.

 

Data Collection Tools and Outcomes:

 

Individual Surveys:

Physical and Mental Health [Short-Form/SF-8]

Postmigration Living Difficulties Checklist [PMLD]

The Refugee Health Screener-15 [RHS-15]

Ken Miller’s Afghan Symptom Checklist [ASCL]

Health Outcomes (via electronic medical records and self-report):

Risk factors

Infectious disease (TB, COVID-19)

Drug-resistant infections

Vaccinations

Maternal and reproductive health

Self-report on access to and use of available services.

2. Exploration of Afghan Refugee Experiences:

 

Objective: To understand the experiences, attitudes, and causes of vulnerabilities among Afghan refugees.

 

Methodology:

 

In-depth Interviews:

Men: 10 (5 with the lowest RHS-15 scores and 5 with the highest)

Women: 10 (5 with the lowest RHS-15 scores and 5 with the highest)

Focus Group Discussions:

Caseworkers: 2 groups (n=10 each)

Focus:

 

Assess gaps in the refugee resettlement program.

Refine the content and process of the program based on insights from the focus group discussions.

  • STUDY PROCEDURES AND TIMEPOINTS (1/2 page)

Approaches to Aim 1 - Develop and pilot-test a cohort study to monitor health and life vulnerabilities of Afghan refugees.

Formative assessment and advocacy meetings. The formative assessment includes activities for the preparation of the study, community engagement, and advocacy meetings to foster a supportive environment for the study. The formative assessment will be conducted in the Sacramento areas with the highest density of Afghan refugees (including Arden Arcade, Rancho Cordova, Elk Grove, and West Sacramento) to assess the characteristics of Afghan refugee populations, the feasibility and acceptability of study methods, and to provide information to tailor RDS methods and logistic approaches to the different Afghan refugee populations and their social contexts. This phase will last about two months.

Participants of the study will be recruited using RDS methods. RDS requires a formative assessment [6, 7] to verify theoretical requirements, understand social network connections, and gather information to inform implementation logistics. The characteristics of Afghan’s social networks also need to be understood to ensure the appropriate number and type of “seeds” (i.e., initial participants who generate peer referral chains from their social circles) are selected, to identify potential “bottlenecks” (i.e., social and physical barriers between networks), and to define variables needed to track “equilibrium” (i.e., when stability in the sample is achieved on key characteristics). This theoretical and logistical information for RDS will be acquired through in-depth key informant interviews. Individuals are eligible for the formative assessment if they a) are aged 18 years and older, b) are members of Afghan refugee community or worked with them as first-hand experience, and c) have lived in the Sacramento area for at least six months.

Key informant interviews. Persons with first-hand information about Afghan refugees, their needs, and best strategies to approach and recruit them to the survey include Afghan refugees themselves and local NGO managers and health authorities who work with or provide services to Afghan refugees. These include community-based organizations, mosques (Aisha, Salaam, and Tawheed mosques), the Office of Refugee Health, California Department of Public Health, and resettlement agencies such as International Rescue Committee and Opening Doors. Such persons are considered key informants (KI) and will be interviewed individually to seek their insights on the questions listed in the Key Informant Interview (KII) guide. We will ensure that key informants include women and members of other groups of Afghan refugees who have historically been difficult to recruit (e.g., Hazara, LGBTQ+).

Key informant interviews procedures. A minimum of 20 key informant interviews will be conducted. KIIs will continue until saturation has been reached; that is, the point at which additional interviews fail to provide new information about the neighborhoods/locations, social structure, groups, and organizations of areas where recently Afghan refugee households settled in the Sacramento area. Our research team will reach out to local NGOs, key service providers, and stakeholders for referrals of people who can serve as key informants. Eligible key informants will be asked to come to the study site where KIIs will be conducted in a private conference room for 1-2 hours. Participants will be provided a meal (if allowed by COVID-19 restrictions) and reimbursement for their travel expenses. Staff trained in interview skill will conduct the KII following a semi- structured interview guide. An introduction will be followed by easy questions to put participants at ease. After each KII is completed, the KII interviewer will review answers, write up the field notes, and note emerging themes to be used in the analysis. Each enrolled KII will be reimbursed ~$20 for participating. The exact amount will be determined by the formative assessment.

Analysis of key informant interview data. We will analyze the data from the KII and discuss primary findings related to RDS theory and logistics, and strategies to improve the survey. For example, if social networks appear too weak or diffuse, the investigators will develop a plan for recruiting additional seeds and alternate strategies for enhancing recruitment based on findings and within a theoretical, probability-based sampling framework. The survey protocol and Standard Operating Procedures (SOPs) will be updated based on findings from the formative assessment. A list of modifications in addition to the revised survey documents will be submitted to the Ethical Review Board for review and approval.

Pilot of the survey questionnaire. Once the survey instrument is finalized, it will be piloted among 5 Afghan refugee households referred by local NGOs; a trained interviewer will individually interview participants referred and administer the questionnaire over phone call or in-person in a private office. Each enrolled individual will be reimbursed the equivalent of ~$20 for participating. Following the questionnaire administration, participants will meet local investigators and be asked for feedback on the interview and survey process. Participants will be asked for recommendations on improving the instrument and specifically on the clarity of questions, re- framing of items, the acceptability of time to complete the survey, and identify terms and constructs that may be missing or are culturally incongruent.

Advocacy meetings. In many settings, refugee populations are subject to stigma and discrimination; it is, therefore, critical to hold advocacy meetings with local health care providers, local authorities, and other key stakeholders prior to starting the survey. Involving key stakeholders from the start will encourage communication and foster a supportive environment for the study. The study core team, research assistants and peers attend gatherings (i.e., after prayer services) to talk about the study. The advocacy meetings will outline the objectives and benefits of the study to participants and emphasize the importance of facilitating refugee population’s access to the survey site.

Sampling method. The study will utilize Respondent Driven Sampling (RDS) to achieve the target samples (N=50 households). The sampling process in this method begins with selecting a small number of recently settled Afghan refugees who have been purposefully selected from the target population. In this method, each primary participant, called a “seed”, is asked to invite a limited number of their peers in the refugee population to participate in the study. Seeds are people who are known among the Afghan refugee populations. A total of 2-3 seeds will be considered. Those peers who successfully participate in the study repeat the process of inviting and referring peers to the study until the sample size reaches the desired number. The participants receive primary and secondary incentives for their own participation in the study and successful referral of peers to the study, respectively. Inviting and referring peers to study is managed using a coupon numbering system. In this study, a maximum of 3 coupons are given to each seed or enrolled participant, so we can reach relatively long sampling chains to avoid bias from the initial seed selection. Recruitment diagnostics will be run weekly to assure that the recruitment is reaching through diverse networks. Additional seeds may be identified and launched as needed.

Enrollment. Enrolled seeds will receive 3 electronic (via email, text message, or WhatsApp app which is popular among Afghans) or paper coupons that include an introductory note on the study, the study phone contact, the study URL (https://www.sehatinitiative.org) and a unique number. Peers who receive a coupon and are interested in participating in the study can call the study team or use the URL to submit a short form using a unique number. Once one of our staff determines their eligibility over a phone call, they will be briefed and upon providing consent, will be enrolled to the study. Anyone enrolled in the study will be asked to also invite and refer any partners they may have in their household to the study. Those who are single will be enrolled as single individuals. Non-seeds follow the same protocols to invite and refer their peers and their partner in their household to the study.

Measurements. All materials (coupons, forms, surveys, questionnaire, study website) will be prepared in English, Dari, and Pashto. The study survey includes sections to collect data for socio-demographic, life and health vulnerabilities (including Physical and Mental Health [Short-Form/SF-8], Postmigration Living Difficulties Checklist [PMLD], The Refugee Health Screener –15 [RHS-15], Ken Miller’s Afghan Symptom Checklist [ASCL]), and a checklist of the first or second-hand experienced conflicts.

  • Socio-demographic: sex, age, education, current and past income, past housing status, current housing status and housing insecurity, current and past occupation, access to and use of California’s Refugee Cash Assistance, food insecurity, current and past marital status, family size, immediate family in Afghanistan, months outside of Afghanistan, months in US.
  • Physical and Mental Health [Short-Form/SF-8]: the SF-8 developed by Quality Metric [8], include 8 questions (General health, Physical functioning, Role – physical, Bodily pain, Vitality, Social functioning, Role – emotional, Mental health) each has five response category (1 to 5) and can be administrated in 2 minutes. The questions have a 4-week recall period and can measure both physical and mental health components. The principal component analysis of SF-8 among conflict-affected people [9] showed two physical (r>0.7) and mental (r>0.7) construct validity, high test-retest reliability (r=0.68).
  • Postmigration Living Difficulties Checklist [PMLD]: PMLD checklist [10] include 23 questions each with five-point Likert scale response that measures the severity of pre and post migration common problems experience by asylum seeker within the past 12-month timeframe. The principal component analysis of PMLD among Afghan refugees in Istanbul [11] showed five constructs (conditions of extreme precarity, asylum difficulties, employment-related problems, access to medical and social services, marginalization and family-related stressors) with Cronbach’s alpha from 0.719 to 0.891.
  • The Refugee Health Screener –15 [RHS-15]: The RHS-15 is a screening tool for common mental disorders in refugee populations. It can be self- or provider-administrated which takes about 4 to 12 minutes to complete. A study of refugees from three different countries [12] showed a very high internal consistency with Cronbach’s alpha 0.92 for questions 1 to 15. With cutoff 12, it has positive and negative predictive values range from 0.78 to 0.98 for PTSD, anxiety, and depression.
  • Ken Miller’s Afghan Symptom Checklist [ASCL]: the ASCL is a 22-item tool [13] to identify the severity of distress among Afghan. It has excellent reliability (Cronbach’s alpha 0.93) and good construct validity, and its score highly correlated with measures of exposure to war-related violence and loss (r=0.70).
  • Conflicts checklist: We aim to understand the ways in which violent conflict and exposure to trauma in Afghanistan and ongoing since immigration affects individuals and households along key social and economic dimensions. Since no validated survey exists for this population, we will modify and contextualize the World Bank Conflict Exposure Survey [14] to collect data on direct and indirect conflict exposure while in Afghanistan, ongoing exposure to conflict-related trauma since immigration and secondary conflict- related trauma exposure as part of the local Afghan community in Sacramento and ‘back home’. The World Bank Conflict Exposure Survey will be supplemented by additional components based on literature review of previous research from war-affected countries [15-19] as well as community trauma exposure [20] and micro/personal trauma exposure survey questions [21].

Based on the participant's choice, we will collect data using an online survey, or interview them over phone calls, WhatsApp call, in-person, or Zoom in their mother language (Dari or Pashto). The above measures will be assessed at baseline visit among enrolled individuals. The enrolled individuals will have a follow-up visit at six months to measure changes in the above vulnerability outcomes. Further data will be collected for enrolled households who provide consent to link their survey data to their medical record data. The medical records data of each household member who consents will be obtained to ascertain the presence of medical conditions and preventative screening. We will obtain data transfer agreements and work with healthcare systems (e.g., Sutter, UC care, etc.) to extract identified electronic medical record data from structured data fields. We will base analyses on the presence of International Classification of Diseases (ICD) codes in problem lists and vaccination records. Specific conditions we will assess include several health indicators such as infectious disease (latent TB [22], COVID-19, drug-resistant infections [23]), vaccinations, and other maternal and reproductive health conditions. Medical records data will be stored in a university-managed, firewall-protected secure data service, and linked to questionnaire data to create a rich database of self-reported information on experiences and clinical data based on medical screenings. We will also link our survey data to Refugee Health Electronic Information System (RHEIS) which collects Refugee Medical Screening (RMS) data including screening data for chronic conditions and infectious disease, and screening for mental health on arrival. UCSF Co-investigator, Dr. Eva Raphael (Family Physician and Clinical Researcher) will lead medical records linkage and extraction, as she has robust experience obtaining data from various healthcare systems.

Retention strategies. While our study is a pilot to build the cohort and find best enrollment and retention strategies, we have several strategies in place including use of electronic messaging, WhatsApp, contact through enrolled household partners, progressive monetary incentives ($20 for baseline visit and $30 for follow-up visit), and social advocacy gathering among communities and outreach programs to maximize retention and re-contact with those who dropped out or missed a visit.

Sample size justification. Our study is a pilot study that is not powered to estimate (rare) outcomes precisely. However, this small study will enable us to assess the feasibility and acceptability of our methods. We calculated the sample size with the following assumptions:

  • Population size (for finite population correction factor), N: 20,000 [24]
  • Hypothesized % frequency of outcome (unknow; 50% leads to the maximum n), p: 50%
  • Confidence limits as % of 100 (absolute +/- %), d: 14%
  • Design effect (for RDS household surveys), DEFF: 2 [25]

Sample size n = DEFF x [Np(1-p)]/ [(d2/Z21-α/2*(N-1)+p*(1-p)] = 98 (we will recruit 100 individuals from 50 households)

Analysis: We will record the frequencies of the total number of eligible refugees who were asked to participate, the number who accept, the number who decline, and the reasons for not wanting to participate. This allows us to calculate the acceptance rate and accrual. For the response rate, we will assess the completeness of answers to key questions at baseline and each follow-up visit. For other study outcomes (measurements of life and health vulnerabilities), we report both crude and RDS-adjusted estimates. For RDS- adjusted estimates which consider network size and homophily within networks, we will use the RDS package in R software [26] and Gile’s successive sampling estimator [27] to produce weighted average or prevalence estimates. We will use R 4.2.1 [28], and STATA v.17 [29] for data analysis.

Approaches to Aim 2 - Explore the experiences, attitudes, and causes of vulnerabilities of Afghan refugees.
We will conduct in-depth interview with men (n=5 and 5) and women (n=5 and 5) participants in the cohort study (Aim 1) who have the lowest and highest RHS-15 scores in their last visit and run four focus group discussions (FGD) among caseworkers (n=10). Each person will receive ~$20 for their time and cost of their participation.

Data collection: Data collection will be done over phone calls, WhatsApp call, in person, or Zoom meeting. A guide will be used to probe: 1) questions and concerns regarding their income, livelihood, and health issues 2) identifying circumstances in which respondents feel unbearable stress or burn out, 3) type of conflicts, either

direct or indirect, they have experienced in the past or are ongoing that are affecting their wellbeing, 4) successful strategies that help them reduce their vulnerabilities, and 5) interventions to address the causes of vulnerabilities.

Qualitative analysis: Our trained staff will take notes and audio record conversations in the in-depth interviews and focus group discussions. After each focus group, the study team will meet to discuss notes and produce a detailed report for each discussion using the notes and audio recordings. Led by Dr. Camin, an iterative qualitative data analysis process will be conducted. A framework analysis will be used for the interpretation of the data. The thematic analysis method will apply to analyze the data. Transcripted and transcribed data will be analyzed based on pre-defined themes (such as livelihood, stressors, conflicts, strategies, and interventions) by Dedoose software. Data will be shared with the CDPH office of refugee to assess the gaps and further refine the content and process of the refugee resettlement program.

Timepoints: Preparation and community engagement (2 months), RDS enrollment and cohort follow-up (9 months), Qualitative study (2 months), Dissemination (1 months).

  • FEASIBILITY (1 paragraph) – The Eureka platform, with its integrative design for mobile research, offers a highly feasible environment for our project that seeks to monitor the life and health vulnerabilities of Afghan refugees post-resettlement. The majority of refugees, especially the younger population, have access to mobile devices, making a phone/web-based respondent driven sampling (RDS) survey not just doable but efficient. The platform's secure backend ensures the confidentiality and safety of sensitive information, which is paramount in studies involving vulnerable populations like refugees. Moreover, Eureka's participant-engaging front-end can enhance the user experience, promoting consistent engagement from our target cohort. Once the study is built on Eureka, its study management portal facilitates timely follow-ups, efficient data collection, and seamless linkage to electronic medical records. The inherent challenges of working with a refugee population, such as trust-building and cultural sensitivities, can be ameliorated with proper training of on-ground staff and tailoring the app interface to be culturally appropriate. In essence, using Eureka not only makes the execution of our study feasible but also streamlines the data collection and analysis processes, enhancing the overall quality and efficiency of our research endeavor.
  • FUNDABILITY (1 paragraph) – What is your current funding for this project, or if currently unfunded, how will this support funding applications?

Although our study is already funded through the UCSF RAP grant, participating in the Build-a-thon offers the chance to broaden our research scope and collaborate on a basic Eureka study. The opportunity to win complimentary Eureka maintenance for a year and access discounted rates for maintenance fees is appealing, as it can facilitate recruitment and enhance our data analysis capabilities. Engagement in such initiatives reflects our proactive approach and dedication to maximizing our research's impact, which can positively influence potential future funding applications.

  • PROFESSIONAL DEVELOPMENT (1 paragraph) – How will this project support the professional development of the team leader and/or team members?

The study will enable us to design and pilot-test methods to assess the life and health vulnerabilities of Afghan refugees during the early post-resettlement period. The formative assessment, the RDS and cohort phases, and the qualitative research parts will be managed by the faculty of three UC campuses, which will foster cross-campus collaborations for the project PI and other co-investigators. Building on our previously established local and state-wide refugee health networks, this project will be the first attempt to document vulnerabilities in newly resettled Afghan refugees in California. We trust that this pilot will open several opportunities for future grant applications to study the health and life vulnerabilities of thousands of Afghan refugees. Our screening data for health and life vulnerabilities will be valuable to plan for future interventions, such as a SHINE nature-based intervention that one of our Iranian scientists at UCSF has developed to reduce stress among low-income families.

  • IMPACT (1 paragraph) – What improvements will result if your research succeeds (e.g., what are the public health implications or community benefits)?

The study finding could indeed be very useful in evaluating continuity of care and health outcomes and vulnerabilities post Refugee Medical Screening (RMS) which 11 counties in California are funded by the government to provide such screening. CA programs follow CDC recommendations for screening and medical exams for Afghan refugees during the initial resettlement period. However, post resettlement health and life outcomes would be valuable to assess. It is the gap that our study addresses. We have engaged the CDPH team and stakeholders to ensure findings are being used for system improvement, to assess the gaps, and further refine the content and process of the refugee resettlement program.

 

 

Comments

Very interesting proposal.  I think Eureka could be very well suited to support the Respondent Driven Sampling (RDS), but we'd have to think about exactly how to design the participant experience of delivering invitations to other participants to join, and how to limit that to only 3 invitations from each participant.  It should be feasible.

It's not totally clear to me what the 6-month follow-up period would be for?  It seems like most of the surveys could be delivered once and then be done?  Or are there outcomes you are looking for over time?

And, will you need to deliver the surveys in Dari or Pashto or some other languages (not just English)?  If so, we will need translations...

We will control the 3-limit enrollment by electronic coupons each enrolled participants receive. 

The study is a pilot cohort, we want to see we can retain most people in the study and also see if the baseline measurements of life and health vulnerabilities would change at 6-month follow-up visit. 

Yes, we need to be able to use several languages for our surveys. Qualtrics will manage these for us.

One more question - do you have some engaged Afghan refugees who could give feedback on design of the study while you are designing it?

Yes, we have one Afghan community member added to our team (Asiya Yama, she/her) who will help us to design the study and give us feedback and guide us on this project. 

 

  • Where is the study site? I wonder if the KII can take place virtually (or if you will travel to Sacramento), as asking people to come to SF may be too far and limit who can participate. 
  • Mark mentions above re: translations. Is Eureka able to support surveys in Dari and Pashto?

We have the option to hold meetings in Sacramento UC Davis Medical Center. If preferred, we will hold all KII on Zoom; so, we are flexible. 

We will use Qualtrics for data collection; We are not sure how much of the recruitment process need to be in Eureka in several language.

s. 

Eureka now supports multi-language studies. The main requirement is that the study team supplies translations for consents and surveys. We haven't done Dari or Pashto yet, but this is possible.

Great. We have people in our team who speak Dari or Pashto as their native lanaguges, and they will tarnsalted materials to Dari and Pashto. 

Thank you for submitting this great proposal. I'm curious to hear more about the sampling methods and "seeds" who will be selected. Will these seed participants be recommended by the KIIs? I'm curious if there will be specific efforts to identify participants who might be less engaged in local organizations and therefore might face different barriers to services or healthcare, or could have different outcomes on some of the screening questionnaires. Thanks for any insight you can share.