Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?
Year: 2022
Type: article
Abstract: BACKGROUND: Current knowledge about parental reasons for allowing child participation in research comes mainly from clinical trials. Fewer data exist on parents' motivations to enrol children in observational studies. OBJECTIVES: Describe reasons parents of preschoolers gave for participating in the Study to Explore Early Development (SEED), a US multi-site study of autism spectrum disorder (ASD) and other developmental delays or disorders (DD), and explore reasons given by child diagnostic and behavioural characteristics at enrolment. METHODS: We included families of children, age 2-5 years, participating in SEED (n = 5696) during 2007-2016. We assigned children to groups based on characteristics at enrolment: previously diagnosed ASD; suspected ASD; non-ASD DD; and population controls (POP). During a study interview, we asked parents their reasons for participating. Two coders independently coded responses and resolved discrepancies via consensus. We fit binary mixed-effects models to evaluate associations of each reason with group and demographics, using POP as reference. RESULTS: Participants gave 1-5 reasons for participation (mean = 1.7, SD = 0.7). Altruism (48.3%), ASD research interest (47.4%) and perceived personal benefit (26.9%) were most common. Two novel reasons were knowing someone outside the household with the study conditions (peripheral relationship; 14.1%) and desire to contribute to a specified result (1.4%). Odds of reporting interest in ASD research were higher among diagnosed ASD participants (odds ratio [OR] 2.89, 95% confidence interval [CI] 2.49-3.35). Perceived personal benefit had higher odds among diagnosed (OR 1.92, 95% CI 1.61-2.29) or suspected ASD (OR 3.67, 95% CI 2.99-4.50) and non-ASD DD (OR 1.80, 95% CI 1.50-2.16) participants. Peripheral relationship with ASD/DD had lower odds among all case groups. CONCLUSIONS: We identified meaningful differences between groups in parent-reported reasons for participation. Differences demonstrate an opportunity for future studies to tailor recruitment materials and increase the perceived benefit for specific prospective participants.
DOI: 10.1111/ppe.12861
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
Funders: Pennsylvania Department of Health, University of Pennsylvania, Michigan State University, Johns Hopkins University, National Institutes of Health, Centers for Disease Control and Prevention, College of Engineering, Michigan State University, Kaiser Foundation Research Institute, University of North Carolina at Chapel Hill, University of Colorado Denver
Awards: DATA COORDINATING CENTER FOR AUTISM & OTHER DEVELOPMENTAL DISABILITIES: SEED I&II, G1073156504, G1325382752, G1695356537, G1698090921, G1799356628, G2112919472, G2201851652, G2769056299, G2922796427, G3059768877, G3199248096, G348543287, G4075176128, NORTH CAROLINA CTR FOR AUTISM & DEVELOPMENT DISABILITIES RESEARCH & EPIDEMIOLOGY, G4376865899, G4412438158, G455390876, COMPONENT A: NC STUDY TO EXPLORE EARLY DEVELOPMENT PHASE 3 (SEED 3), G4689219259, G4841778848, NATIONAL CADDRE STUDY: CHILD DEVELOPMENT AND AUTISM, G505094182, G5145705314, G5190902592, G5250426371, NATIONAL CADDRE STUDY: CHILD DEVELOPMENT AND AUTISM, G5705284310, DATA COORDINATING CENTER FOR AUTISM & OTHER DISABILITIES, G5885571094, COMPONENT A: CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT (SEED) 3, CENTERS FOR AUTISM & DEVELOP DISABILITIES RESARCH & EPIDEMIOL:A CASE-COHORT STUDY, COLORADO CADDRE: A CASE-COHORT STUDY, G6600914918, G664877711, G6667261059, G6838829540, G698974336, G7018679994, G7142980125, G7415670546, G746684721, G7480918048, G7543494365, G7621443489, G7741351181, G7989798703, G845914636, G8572334971, NC CADDRE: STUDY TO EXPLORE EARLY DEVELOPMENT (SEED) PHASE II, COLORADO SEED COMPONENT A & COMPONENT B
OpenAlex ID: W4210738328