Qualitative Information Collection on emerging diseases
among the foreign-born in the United States
Request for approval of an extension of an existing
Generic Information Collection
Statement B
Contact:
Amy McMillen
Office of Policy and Planning
National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention
1600 Clifton Road, N.E., MS C-12
Atlanta, Georgia 30333
Phone: (404) 639-1045
Fax: (404) 248-4146
Email: [email protected]
TABLE OF CONTENTS
PART B. COLLECTION OF INFORMATION EMPLOYING STATISTICAL METHODS 3
B.1. Respondent Universe and Sampling Methods 3
B.2. Procedures for the Collection of Information 3
B.3. Methods to Maximize Response Rates and Deal with Non-response 5
B.4. Test of Procedures or Methods to be Undertaken 6
B.5. Individuals Consulted on Statistical Aspects and Individuals Collecting and/or Analyzing Data 6
Qualitative Information Collection on emerging diseases among the foreign-born in the United States
Request for OMB Approval of a Generic Clearance for Data Collection
PART B. COLLECTION OF INFORMATION EMPLOYING STATISTICAL METHODS
B.1. Respondent Universe and Sampling Methods
The respondent universe consists of foreign-born individuals in specific geographic areas (e.g., neighborhoods, cities, counties) in the United States. Foreign-born individuals include temporary and permanent immigrants, international travelers, and refugees settled in the United States. In 2011 there were approximately 40.3 million foreign-born people residing in the United States [1]. Each information collection will only target foreign-born individuals from a specific country(ies) of birth (e.g., Mexican-born) and within defined geographic areas (e.g., city of San Diego CA or DeKalb County GA).
For focus groups and key informant interviews, purposive non-probability sampling will be used to identify and recruit participants in accordance with the specific target population (e.g., country of birth, age, gender, ethnic group, language ability, occupation, education level) and purpose of the project. Eligibility criteria will be established for all focus group participants, and potential participants will be screened using a standard screening form. Focus group participants’ recruitment will take place through collaboration with community-based organizations and other groups/methods including but not limited to: state and local health departments, on-site recruitment at various points of interest such as international ports of entry and ethnic events, and cultural and faith-based community organizations. Participants will be recruited among target community leaders and individuals working in organizations serving those communities and are familiar with community members’ knowledge, practices, and beliefs about communicable diseases. Community members will also be recruited to participate in key informant interviews as experts on this subject matter. DGMQ local partners will be consulted to identify potential participants and participants will be contacted directly by DGMQ to set up the interviews.
As many as 300 and 125 respondents are anticipated to take part in focus groups and key informant interviews, respectively, each year.
Each proposed activity will submit an application for IRB review and approval, which will outline the procedures for participant selection and consent.
B.2. Procedures for the Collection of Information
Information collections will consist of focus group discussions and key informant interviews with community leaders and members of the target populations and individuals working in organizations serving those communities. All questions will be semi-structured and open-ended. Data collection will occur under the direction of a trained moderator or interviewer and with the assistance of an interpreter, as needed. These discussions and interviews may take place in-person, through web-interface, or by telephone. The discussions and interviews may be audio-recorded and transcripts will be prepared from these recordings. Notes will also be taken during the discussions and interviews to ensure that records of the data collected exist in the case of audio equipment malfunction.
Each proposed project will submit culturally and linguistically appropriate tools for data collection (i.e., focus group and interview guides) in the statement provided to OMB. To enhance participation and ensure cultural and linguistic appropriateness of data collection DGMQ will, as appropriate, seek collaboration with target community representatives and local organizations. Discussion and interview guides will be piloted with less than nine people before approval from OMB is sought and focus groups are conducted to ensure appropriateness in generating the desired data. If needed, changes will be made to the guides. As many as 300 respondents in total may take part in one of the 30 focus groups per year for which we are requesting approval. Likewise, as many as 125 respondents may participate in key informant interviews per year.
Focus groups
DGMQ staff or a contractor will use available target population databases and/or work with community based organizations to recruit participants by advertising the focus groups to the population who utilize their services.
A screening tool will be used in order to ensure appropriate recruitment (Attachment X: Participant Screener). As many as 300 respondents in total may take part in one of the 30 focus groups with 10 persons each per year for which we are requesting approval.
A moderator will lead the discussions, using a discussion guide comprised of key topics and probing questions (Attachments F). All reasonable attempts will be made to conduct the focus groups in the native language of the participants. If that is not possible, an interpreter will be present to ensure the moderator’s words are appropriately communicated to discussion participants and that the words of the participants are also appropriately captured. The discussions will be audio-recorded, notes compiled and transcripts will be prepared from these recordings. Notes will also be taken during the discussions to ensure that records of the focus groups exist in the case of audio equipment malfunction.
Analysis will begin after the focus group discussion has been transcribed and/or notes compiled. Results will be aggregated in a final summary report in which comments and results will not be linked to individual participants to uphold anonymity. All information collected will be destroyed after three years.
Key informant interviews
Participants will be recruited among target community leaders and individuals working in organizations serving those communities and are familiar with community members’ knowledge, practices, and beliefs about communicable diseases. Community members will also be recruited to participate in key informant interviews as experts on this subject matter. DGMQ local partners will be consulted to identify potential participants and participants will be contacted directly by DGMQ to set up the interviews. All interviews will be conducted with the use of interview guides (Attachment G).
Most data collection will take place in person or by phone. When appropriate for the target population, web-based focus groups and interviews may be also used.
Unusual problems requiring specialized sampling procedures
Unusual problems requiring specialized sampling are expected to be rare and will be disclosed in individual requests under this generic clearance.
Any use of periodic (less frequent than annual) data collection cycles to reduce burden?
Use of periodic data collection cycles, e.g. once over the approval term of the generic, for specific target sub-populations (e.g., Mexican-born) and geographic locations is likely for most information collections as part of this generic clearance. The periodicity of data collection will be described in each proposed project. Justification and description for more frequent data collection will be provided if it applies to the proposed project.
B.3. Methods to Maximize Response Rates and Deal with Non-response
The following are the examples of the procedures that have proven effective in previous studies and will be used when possible to obtain an adequate participation:
Informing respondents of what the project is asking, why it is being asked, who will see the results, and how the results will be used, as well as discussing how respondents will benefit from the results and how the findings will be put into action (Attachment H).
Using bilingual and bicultural interviewers and culturally and linguistically appropriate data collection instruments.
A token of appreciation for a respondent’s time and interest will be given to participants through the community based organizations in the form of a transportation or food token, child care assistance and/or a gift card.
Addressing data security and confidentiality with respondents, since respondents who know their answers will not be linked to them in any way will be more likely to respond and more likely to provide truthful responses
Minimizing the time needed for participation in the project.
Informing respondents how much time the project will take so that they know what to expect.
Utilizing deadlines, and follow-up calls or emails to remind respondents about the focus groups and encourage participation.
Potential respondents will be informed about the importance of this project
Collaborating to collect information with community-based, faith-based, and cultural organizations that serve the target populations.
Obtaining support for information collections from trusted community leaders ad gatekeepers in the target populations.
B.4. Test of Procedures or Methods to be Undertaken
DGMQ will implement strategies, e.g. use of validated instruments and pilot testing, to ensure that all information collection instruments and tools are linguistically and culturally appropriate for the populations targeted in each proposed project. The importance of utilizing culturally and linguistically appropriate instruments and procedures is well-documented and is an important aspect of designing and implementing DGMQ’s activities and programs [2-6].
The use of previously validated focus group guides and information collection instruments will be encouraged, as appropriate. If previously validated instruments are not available or appropriate for a proposed project, then the instruments and methods of data collection will be piloted with less than nine people before focus groups are conducted to ensure its appropriateness in generating the desired data. If needed, minimal changes will be made to the guides. However, if significant changes are needed, OMB will be notified before data collection begins.
B.5. Individuals Consulted on Statistical Aspects and Individuals Collecting and/or Analyzing Data
The following individuals, including contractors, who may be chosen to pre-test [review?] information collection instruments and tools and conduct information collections, will be available to provide advice about the design of statistical and sampling procedures undertaken as part of these data collection activities:
Clive Brown, MBBS, Associate Director for Science, Division of Global Migration and Quarantine
Nicole Cohen, MD, Associate Chief for Science, Quarantine and Border Health Services Branch, Division of Global Migration and Quarantine
Christine Prue, PhD, Health Communication Specialist, Office of the Director, National Center for Emerging and Zoonotic Infectious Diseases
Margaret Coleman, PhD, Economist, Office of the Director, Division of Global Migration and Quarantine
Jianrong Shi, Statistician, Office of the Director, Division of Global Migration and Quarantine
Mark Sotir, PhD, MPH, Lead, Surveillance and Epidemiology Team, Traveler’s Health Branch, Division of Global Migration and Quarantine
Hongjiang Gao, PhD, Statistician, Office of the Director, Division of Global Migration and Quarantine
DGMQ will determine if additional consultation is required and will report any consultants, as well as any individuals collecting and/or analyzing the data in the individual packages.
3. Merry, L., et al., Cross-border movement and women's health: how to capture the data. International Journal for Equity in Health, 2011. 10(1): p. 56.
4. Hendrickson, S.G., Beyond Translation... Cultural Fit. Western Journal of Nursing Research, 2003. 25(5): p. 593-608.
5. T. D'Alonzo, K., Evaluation and revision of questionnaires for use among low-literacy immigrant Latinos. Revista Latino-Americana de Enfermagem, 2011. 19: p. 1255-1264.
6. Kilanowski, J.F. and E.S. Trapl, Evaluation of the use of audio-enhanced personal digital assistants to survey Latino migrant farmworkers. Research in Nursing & Health, 2010. 33(2): p. 156-163.
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