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Developing and Testing a Method for Engagement in Research Using WhatsApp (WI-CARE)

10 september 2026 bijgewerkt door: Gloria Aidoo-Frimpong, State University of New York at Buffalo

WICARE: WhatsApp Immigrant-Centered Research Engagement

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.

Studie Overzicht

Toestand

Nog niet aan het werven

Conditie

Interventie / Behandeling

Gedetailleerde beschrijving

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.

Aim 3 will pilot WI-CARE among adult African immigrants residing in Connecticut, Maine, Massachusetts, Minnesota, Pennsylvania, and Rhode Island. Approximately 300 participants will be enrolled in a centralized WhatsApp community. Participants will be invited to opt into structured scenarios based on their interests and availability. The scenarios will simulate activities conducted during different stages of research, including onboarding and consent, research planning, recruitment, data collection, interpretation of findings, and dissemination.

Within each scenario, trained facilitators will use the WI-CARE protocol to guide participants through research-related activities. Participants will then evaluate the clarity, accessibility, cultural relevance, privacy, and usability of the engagement process. WhatsApp activity metrics, surveys, and individual interviews will be used to assess participation, retention, task completion, engagement quality, trustworthiness, acceptability, usability, and feasibility. The study will also examine whether engagement experiences differ according to participant characteristics and geographic location.

Quantitative and qualitative findings will be integrated to identify areas of agreement, differences across participant groups, and aspects of the protocol requiring revision. The final WI-CARE protocol will provide an evidence-informed approach for using WhatsApp to engage African immigrant communities throughout the research process.

Studietype

Ingrijpend

Inschrijving (Geschat)

300

Fase

  • Niet toepasbaar

Contacten en locaties

In dit gedeelte vindt u de contactgegevens van degenen die het onderzoek uitvoeren en informatie over waar dit onderzoek wordt uitgevoerd.

Studiecontact

Studie Locaties

  • Verenigde Staten
    • Massachusetts
      • Boston, Massachusetts, Verenigde Staten, 02130
        • Multicultural AIDS Coalition

Deelname Criteria

Onderzoekers zoeken naar mensen die aan een bepaalde beschrijving voldoen, de zogenaamde geschiktheidscriteria. Enkele voorbeelden van deze criteria zijn iemands algemene gezondheidstoestand of eerdere behandelingen.

Geschiktheidscriteria

Leeftijden die in aanmerking komen voor studie

  • Volwassen
  • Oudere volwassene

Accepteert gezonde vrijwilligers

Ja

Beschrijving

Inclusion Criteria:

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

Exclusion Criteria:

  • Younger than 18 years of age
  • Unable or unwilling to provide informed consent
  • Does not meet the eligibility requirements for the applicable study component

Studie plan

Dit gedeelte bevat details van het studieplan, inclusief hoe de studie is opgezet en wat de studie meet.

Hoe is de studie opgezet?

Ontwerpdetails

  • Primair doel: Ander
  • Toewijzing: NVT
  • Interventioneel model: Opdracht voor een enkele groep
  • Masker: Geen (open label)

Wapens en interventies

Deelnemersgroep / Arm
Interventie / Behandeling
Experimenteel: 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.
Gedragsmatig: WI-CARE Protocol
WI-CARE is a culturally and linguistically tailored protocol for engaging African immigrants in research through WhatsApp. The protocol provides structured procedures for onboarding and informed consent, communication, privacy and confidentiality, facilitation, technical support, and participation in research activities. Trained facilitators will use WI-CARE to guide participants through scenarios representing research planning, recruitment, data collection, interpretation of findings, and dissemination. Participants may communicate through text, voice notes, audio or video calls, surveys, polls, group discussions, and multimedia features. Participants will provide feedback on the clarity, accessibility, cultural relevance, acceptability, usability, and trustworthiness of the engagement process.

Wat meet het onderzoek?

Primaire uitkomstmaten

Uitkomstmaat
Maatregel Beschrijving
Tijdsspanne
Quality of Research Engagement
Tijdsspanne: 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.
6 months
Engagement Context
Tijdsspanne: 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.
12 months

Secundaire uitkomstmaten

Uitkomstmaat
Maatregel Beschrijving
Tijdsspanne
WI-CARE Acceptability
Tijdsspanne: 6 months
Acceptability will be assessed through exit-survey items measuring participants' satisfaction with WI-CARE and the extent to which they consider the protocol appropriate for engaging African immigrants in research. Responses will be summarized using item-level frequencies and mean or median scores, as appropriate. Higher ratings indicate greater acceptability.
6 months
WI-CARE Usability
Tijdsspanne: 6 months
Usability will be assessed through survey items informed by the Unified Theory of Acceptance and Use of Technology. Items will examine the ease of learning and using WI-CARE procedures and WhatsApp features, the clarity of scenario instructions, and the effort required to participate. Responses will be combined according to the final survey scoring procedures. Higher ratings indicate greater perceived usability.
6 months
Scenario Participation Rate
Tijdsspanne: 6 months
The scenario participation rate will be calculated as the number of enrolled participants who enter and participate in each WI-CARE scenario divided by the number of enrolled participants invited to that scenario, multiplied by 100. Rates will be reported for each scenario and across the pilot.
6 months
Scenario Task Completion Rate
Tijdsspanne: At the completion of each scenario, up to approximately 6 months after enrollment
The task completion rate will be calculated as the number of participants who complete the required activity within each WI-CARE scenario divided by the number of participants who begin that scenario, multiplied by 100. Activities may include completing a survey, participating in a group discussion, reviewing research findings, or providing feedback.
At the completion of each scenario, up to approximately 6 months after enrollment
Participant Retention Rate
Tijdsspanne: At the end of the WI-CARE pilot, approximately 6 months after enrollment
The retention rate will be calculated as the number of enrolled participants who complete the final WI-CARE evaluation divided by the total number enrolled in the WI-CARE WhatsApp Community, multiplied by 100.
At the end of the WI-CARE pilot, approximately 6 months after enrollment
Trustworthiness of the Engagement Process
Tijdsspanne: At the end of the WI-CARE pilot, approximately 6 months after enrollment
Participant perceptions of trustworthiness will be assessed through exit-survey items addressing transparency, respect, privacy, confidentiality, data security, and confidence in the WI-CARE engagement process. Responses will be summarized using item-level frequencies and mean or median scores, as appropriate. Higher ratings indicate greater perceived trustworthiness.
At the end of the WI-CARE pilot, approximately 6 months after enrollment
Frequency and Type of Participant Interactions
Tijdsspanne: During each WI-CARE scenario, up to 6 months after enrollment
WhatsApp analytics will be used to calculate the number of participant interactions during each scenario. Interactions will be summarized overall and by communication type, including group messages, one-on-one text messages, audio notes, and media sharing.
During each WI-CARE scenario, up to 6 months after enrollment

Medewerkers en onderzoekers

Hier vindt u mensen en organisaties die betrokken zijn bij dit onderzoek.

Sponsor

State University of New York at Buffalo

Onderzoekers

  • Hoofdonderzoeker: Gloria AIDOO-FRIMPONG, PhD, MPH, MA, University at Buffalo

Publicaties en nuttige links

De persoon die verantwoordelijk is voor het invoeren van informatie over het onderzoek stelt deze publicaties vrijwillig ter beschikking. Dit kan gaan over alles wat met het onderzoek te maken heeft.

Algemene publicaties

Nuttige links

Studie record data

Deze datums volgen de voortgang van het onderzoeksdossier en de samenvatting van de ingediende resultaten bij ClinicalTrials.gov. Studieverslagen en gerapporteerde resultaten worden beoordeeld door de National Library of Medicine (NLM) om er zeker van te zijn dat ze voldoen aan specifieke kwaliteitscontrolenormen voordat ze op de openbare website worden geplaatst.

Bestudeer belangrijke data

Studie start (Geschat)

1 december 2026

Primaire voltooiing (Geschat)

30 juli 2028

Studie voltooiing (Geschat)

30 mei 2029

Studieregistratiedata

Eerst ingediend

10 september 2026

Eerst ingediend dat voldeed aan de QC-criteria

10 september 2026

Eerst geplaatst (Werkelijk)

18 september 2026

Updates van studierecords

Laatste update geplaatst (Werkelijk)

18 september 2026

Laatste update ingediend die voldeed aan QC-criteria

10 september 2026

Laatst geverifieerd

1 september 2026

Meer informatie

Termen gerelateerd aan deze studie

Trefwoorden

Aanvullende relevante MeSH-voorwaarden

Andere studie-ID-nummers

  • STUDY00010689
  • SOE-2024C3-42543 (Ander subsidie-/financieringsnummer: PCORI)

Plan Individuele Deelnemersgegevens (IPD)

Bent u van plan om gegevens van individuele deelnemers (IPD) te delen?

NEE

Beschrijving IPD-plan

Individual participant data will not be shared with researchers outside the study team. The study includes qualitative data, WhatsApp engagement data, and information from members of relatively small and connected African immigrant communities. Even after removing direct identifiers, combining participants' demographic characteristics, migration histories, geographic locations, and narrative responses may create a risk of re-identification.

Informatie over medicijnen en apparaten, studiedocumenten

Bestudeert een door de Amerikaanse FDA gereguleerd geneesmiddel

Nee

Bestudeert een door de Amerikaanse FDA gereguleerd apparaatproduct

Nee

Deze informatie is zonder wijzigingen rechtstreeks van de website clinicaltrials.gov gehaald. Als u verzoeken heeft om uw onderzoeksgegevens te wijzigen, te verwijderen of bij te werken, neem dan contact op met register@clinicaltrials.gov. Zodra er een wijziging wordt doorgevoerd op clinicaltrials.gov, wordt deze ook automatisch bijgewerkt op onze website .

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