Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort
Abstract Introduction: Participant recruitment and retention (R&R) are well-documented challenges in longitudinal studies, especially those involving populations historically underrepresented in research and vulnerable groups (e.g., pregnant people or young children and their families), as is...
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| Format: | Article |
| Language: | English |
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Cambridge University Press
2024-01-01
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| Series: | Journal of Clinical and Translational Science |
| Subjects: | |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866124000049/type/journal_article |
| _version_ | 1827338709383512064 |
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| author | Aleksandra E. Zgierska Tatum Gramly Nicholas Prestayko Danielle Symons Downs Traci M. Murray Lea G. Yerby Brittany Howell Barbara Stahlman Jennifer Cruz Arjola Agolli Holly Horan Florence Hilliard Julie M. Croff the HEALthy Brain and Child Development (HBCD) Consortium |
| author_facet | Aleksandra E. Zgierska Tatum Gramly Nicholas Prestayko Danielle Symons Downs Traci M. Murray Lea G. Yerby Brittany Howell Barbara Stahlman Jennifer Cruz Arjola Agolli Holly Horan Florence Hilliard Julie M. Croff the HEALthy Brain and Child Development (HBCD) Consortium |
| author_sort | Aleksandra E. Zgierska |
| collection | DOAJ |
| description |
Abstract
Introduction:
Participant recruitment and retention (R&R) are well-documented challenges in longitudinal studies, especially those involving populations historically underrepresented in research and vulnerable groups (e.g., pregnant people or young children and their families), as is the focus of the HEALthy Brain and Child Development (HBCD) birth cohort study. Subpar access to transportation, overnight lodging, childcare, or meals can compromise R&R; yet, guidance on how to overcome these “logistical barriers” is sparse. This study’s goal was to learn about the HBCD sites’ plans and develop best practice recommendations for the HBCD consortium for addressing these logistical barriers.
Methods:
The HBCD’s workgroups developed a survey asking the HBCD sites about their plans for supporting research-related transportation, lodging, childcare, and meals, and about the presence of institutional policies to guide their approach. Descriptive statistics described the quantitative survey data. Qualitative survey responses were brief, not warranting formal qualitative analysis; their content was summarized.
Results:
Twenty-eight respondents, representing unique recruitment locations across the U.S., completed the survey. The results indicated substantial heterogeneity across the respondents in their approach toward supporting research-related transportation, lodging, childcare, and meals. Three respondents were aware of institutional policies guiding research-related transportation (10.7%) or childcare (10.7%).
Conclusions:
This study highlighted heterogeneity in approaches and scarcity of institutional policies regarding research-related transportation, lodging, childcare, and meals, underscoring the need for guidance in this area to ensure equitable support of participant R&R across different settings and populations, so that participants are representative of the larger community, and increase research result validity and generalizability.
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| first_indexed | 2024-03-07T19:38:38Z |
| format | Article |
| id | doaj.art-6567811b4cf64e3dba32408e8d3352d0 |
| institution | Directory Open Access Journal |
| issn | 2059-8661 |
| language | English |
| last_indexed | 2024-03-07T19:38:38Z |
| publishDate | 2024-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj.art-6567811b4cf64e3dba32408e8d3352d02024-02-29T07:10:15ZengCambridge University PressJournal of Clinical and Translational Science2059-86612024-01-01810.1017/cts.2024.4Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohortAleksandra E. Zgierska0https://orcid.org/0000-0002-7773-6003Tatum Gramly1Nicholas Prestayko2Danielle Symons Downs3Traci M. Murray4Lea G. Yerby5Brittany Howell6Barbara Stahlman7Jennifer Cruz8Arjola Agolli9Holly Horan10Florence Hilliard11Julie M. Croff12the HEALthy Brain and Child Development (HBCD) ConsortiumDepartments of Family and Community Medicine, Anesthesiology and Perioperative Medicine, and Public Health Sciences, Pennsylvania State University College of Medicine, Hershey, PA, USADepartment of Family and Community Medicine, Pennsylvania State University College of Medicine, Hershey, PA, USADepartment of Family and Community Medicine, Pennsylvania State University College of Medicine, Hershey, PA, USADepartment of Kinesiology and College of Medicine, Department of Obstetrics and Gynecology, Pennsylvania State University College of Health and Human Development, University Park, PA, USANational Institutes of Health, National Institute on Drug Abuse, Bethesda, MD, USADepartment of Community Medicine and Population Health, The University of Alabama College of Community Health Sciences, Tuscaloosa, AL, USADepartment of Human Development and Family Science, Virginia Tech, Fralin Biomedical Research Institute, Roanoke, VA, USADepartment of Family and Community Medicine, Pennsylvania State University College of Medicine, Hershey, PA, USADepartment of Family and Community Medicine, Pennsylvania State University College of Medicine, Hershey, PA, USADepartment of Family and Community Medicine, Pennsylvania State University College of Medicine, Hershey, PA, USADepartment of Obstetrics and Gynecology, Global and Rural Women’s Health Program, Heersink School of Medicine, The University of Alabama at Birmingham, Birmingham, AL, USAUniversity of Wisconsin-Madison Waisman Center, Madison, WI, USAOklahoma State University Center for Health Sciences, Tulsa, OK, USA Abstract Introduction: Participant recruitment and retention (R&R) are well-documented challenges in longitudinal studies, especially those involving populations historically underrepresented in research and vulnerable groups (e.g., pregnant people or young children and their families), as is the focus of the HEALthy Brain and Child Development (HBCD) birth cohort study. Subpar access to transportation, overnight lodging, childcare, or meals can compromise R&R; yet, guidance on how to overcome these “logistical barriers” is sparse. This study’s goal was to learn about the HBCD sites’ plans and develop best practice recommendations for the HBCD consortium for addressing these logistical barriers. Methods: The HBCD’s workgroups developed a survey asking the HBCD sites about their plans for supporting research-related transportation, lodging, childcare, and meals, and about the presence of institutional policies to guide their approach. Descriptive statistics described the quantitative survey data. Qualitative survey responses were brief, not warranting formal qualitative analysis; their content was summarized. Results: Twenty-eight respondents, representing unique recruitment locations across the U.S., completed the survey. The results indicated substantial heterogeneity across the respondents in their approach toward supporting research-related transportation, lodging, childcare, and meals. Three respondents were aware of institutional policies guiding research-related transportation (10.7%) or childcare (10.7%). Conclusions: This study highlighted heterogeneity in approaches and scarcity of institutional policies regarding research-related transportation, lodging, childcare, and meals, underscoring the need for guidance in this area to ensure equitable support of participant R&R across different settings and populations, so that participants are representative of the larger community, and increase research result validity and generalizability. https://www.cambridge.org/core/product/identifier/S2059866124000049/type/journal_articleChildcarelodgingmealrecruitmentretentiontransportation |
| spellingShingle | Aleksandra E. Zgierska Tatum Gramly Nicholas Prestayko Danielle Symons Downs Traci M. Murray Lea G. Yerby Brittany Howell Barbara Stahlman Jennifer Cruz Arjola Agolli Holly Horan Florence Hilliard Julie M. Croff the HEALthy Brain and Child Development (HBCD) Consortium Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort Journal of Clinical and Translational Science Childcare lodging meal recruitment retention transportation |
| title | Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort |
| title_full | Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort |
| title_fullStr | Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort |
| title_full_unstemmed | Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort |
| title_short | Transportation, childcare, lodging, and meals: Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort |
| title_sort | transportation childcare lodging and meals key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort |
| topic | Childcare lodging meal recruitment retention transportation |
| url | https://www.cambridge.org/core/product/identifier/S2059866124000049/type/journal_article |
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