TY - JOUR
T1 - Transportation, childcare, lodging, and meals
T2 - Key for participant engagement and inclusion of historically underrepresented populations in the healthy brain and child development birth cohort
AU - Zgierska, Aleksandra E.
AU - Gramly, Tatum
AU - Prestayko, Nicholas
AU - Symons Downs, Danielle
AU - Murray, Traci M.
AU - Yerby, Lea G.
AU - Howell, Brittany
AU - Stahlman, Barbara
AU - Cruz, Jennifer
AU - Agolli, Arjola
AU - Horan, Holly
AU - Hilliard, Florence
AU - Croff, Julie M.
N1 - Publisher Copyright:
© The Author(s), 2024. Published by Cambridge University Press on behalf of Association for Clinical and Translational Science.
PY - 2024/2/12
Y1 - 2024/2/12
N2 - 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.
AB - 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.
KW - Childcare
KW - lodging
KW - meal
KW - recruitment
KW - retention
KW - transportation
UR - http://www.scopus.com/inward/record.url?scp=85186165239&partnerID=8YFLogxK
U2 - 10.1017/cts.2024.4
DO - 10.1017/cts.2024.4
M3 - Article
AN - SCOPUS:85186165239
SN - 2059-8661
VL - 8
JO - Journal of Clinical and Translational Science
JF - Journal of Clinical and Translational Science
IS - 1
M1 - e38
ER -