WICARE: WhatsApp Immigrant-Centered Research Engagement
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 300
- 试验地点
- 1
- 主要终点
- Quality of Research Engagement
研究概览
简要总结
African immigrants are underrepresented in health research in the United States. Barriers to research participation may include limited access to culturally and linguistically appropriate information, concerns about privacy, distrust of research institutions, stigma, and difficulty participating in traditional in-person activities. WhatsApp is commonly used within African immigrant communities, but there is limited evidence about how it can support meaningful engagement throughout the research process.
This study will develop and test the WhatsApp Immigrant-Centered Research Engagement (WI-CARE) protocol. WI-CARE will provide researchers and community partners with structured guidance for using WhatsApp to engage African immigrants in research planning, recruitment, data collection, interpretation, and dissemination.
The study has three aims. First, the research team will conduct surveys and focus groups to identify the WhatsApp features and engagement practices that facilitate or hinder participation in research. Second, the study team and African immigrant partners will use these findings to develop and refine the WI-CARE protocol. Third, the protocol will be tested through structured scenarios that simulate activities conducted during different stages of research. Participants will provide feedback about the acceptability, usability, feasibility, cultural relevance, privacy, trustworthiness, and quality of engagement supported by WI-CARE.
The study will include adult African immigrants living in Connecticut, Maine, Massachusetts, Minnesota, Pennsylvania, and Rhode Island. Findings will be used to refine WI-CARE and inform the use of digital platforms to support equitable engagement of African immigrant communities in health research.
详细描述
African immigrants are one of the fastest-growing immigrant populations in the United States but remain underrepresented in clinical, public health, and patient-centered research. Barriers to engagement include distrust of research institutions, concerns about privacy and immigration status, language differences, stigma, limited research literacy, and a lack of culturally appropriate engagement approaches. These barriers may limit opportunities for African immigrants to influence the questions, methods, implementation, interpretation, and dissemination of research relevant to their communities.
WhatsApp is widely used by African immigrant communities for communication, information sharing, and social support. Although researchers have used WhatsApp for participant recruitment and data collection, less is known about how the platform can support sustained and meaningful engagement across the research lifecycle. There is also no standard protocol to guide researchers in using WhatsApp for research engagement with African immigrant communities.
This mixed-methods study will develop and pilot the WhatsApp Immigrant-Centered Research Engagement (WI-CARE) protocol. WI-CARE will provide structured guidance for using WhatsApp features to support culturally and linguistically appropriate communication, privacy, trust, inclusion, and participation in research. The study is guided by the Unified Theory of Acceptance and Use of Technology and measures of patient engagement in research.
Aim 1 will identify the WhatsApp features and engagement practices that facilitate or hinder research engagement. Adult African immigrants will complete a survey about their experiences with WhatsApp, preferences for research communication and participation, perceived barriers, trust, privacy, and factors affecting their willingness to use WhatsApp for research engagement. Focus groups will provide additional information about participants' experiences and recommendations.
Aim 2 will use findings from Aim 1 to develop the WI-CARE protocol through a participatory process led by the study team, which includes African immigrant partner organizations and academic researchers. The protocol will address onboarding, informed consent, communication, privacy and confidentiality, multilingual engagement, facilitation, technical support, data collection, interpretation of findings, and dissemination. African immigrant patients and other experts will review the draft protocol for feasibility, usability, cultural relevance, and adaptability. Their feedback will guide iterative revisions.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Other
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Aim 1 survey and focus group participants:
- •Aged 18 years or older
- •Born in a sub-Saharan African country
- •Currently residing in the United States
- •Able to read and speak English, French, or Kiswahili
- •Able and willing to provide informed consent
- •Aim 2 expert panel participants:
- •Aged 18 years or older
- •Currently residing in the United States
- •Able to read and speak English, French, or Kiswahili
- •Able and willing to provide informed consent
- •Has relevant knowledge, professional experience, or lived experience related to African immigrant health or digital research engagement
- •Aim 3 pilot participants:
- •Aged 18 years or older
- •Born in a sub-Saharan African country
- •Currently residing in Connecticut, Maine, Massachusetts, Minnesota, Pennsylvania, or Rhode Island
- •Able to read and speak English, French, or Kiswahili
- •Has access to an internet-connected device that can use WhatsApp
- •Able and willing to join the WI-CARE WhatsApp Community and participate in study activities conducted through WhatsApp
- •Able and willing to provide informed consent
排除标准
- •Younger than 18 years of age
- •Unable or unwilling to provide informed consent
- •Does not meet the eligibility requirements for the applicable study component
研究组 & 干预措施
WI-CARE Protocol
Participants will join the centralized WI-CARE WhatsApp Community and receive structured onboarding, communication, privacy, facilitation, and research-engagement procedures. Participants will be invited to take part in six scenarios representing activities across the research lifecycle. Scenario participation will be based on participants' interests and availability. All participants will be considered part of the same study arm.
干预措施: WI-CARE Protocol (Behavioral)
结局指标
主要结局
Quality of Research Engagement
时间窗: 6 months
Participant-reported quality of engagement will be assessed using the 22-item Patient Engagement in Research Scale (PEIRS-22). Item responses will be scored according to the PEIRS-22 scoring guidance. Higher scores indicate greater perceived quality of engagement.
Engagement Context
时间窗: 12 months
Engagement context will be assessed using survey items based on the Unified Theory of Acceptance and Use of Technology. Separate scores will be calculated for performance expectancy, effort expectancy, social influence, facilitating conditions, behavioral intention, and use behavior. These constructs assess the acceptability, usability, feasibility, and perceived effectiveness of WI-CARE. Each construct will be scored according to the final survey scoring procedures, with higher scores indicating a more favorable assessment of WI-CARE.
次要结局
- WI-CARE Acceptability(6 months)
- WI-CARE Usability(6 months)
- Scenario Participation Rate(6 months)
- Scenario Task Completion Rate(At the completion of each scenario, up to approximately 6 months after enrollment)
- Participant Retention Rate(At the end of the WI-CARE pilot, approximately 6 months after enrollment)
- Trustworthiness of the Engagement Process(At the end of the WI-CARE pilot, approximately 6 months after enrollment)
- Frequency and Type of Participant Interactions(During each WI-CARE scenario, up to 6 months after enrollment)
研究者
Gloria Aidoo-Frimpong
Assistant Professor
State University of New York at Buffalo