ArticleBMC pediatrics2013
Analysis of motivations that lead women to participate (or not) in a newborn cohort study.
Article in BMC pediatrics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
21 citing papers in PubMed, 1 synthesis or guideline pooled it, 31 citations in OpenAlex.
- Parental Views of Facilitators and Barriers to Research Participation: Systematic Review.Pediatrics · 2023Pooled it
- Trial
- Feasibility and acceptability of conducting a birth cohort study during the COVID-19 pandemic: a mixed-methods study.BMC pregnancy and childbirth · 2025Article
- Sociodemographic characteristics and predictive factors of attrition: comparison in two final waves of a birth cohort study in Ecuador.Frontiers in reproductive health · 2025Article
- Motivations for and against Participation in Neonatal Research: Insights from Interviews of Diverse Parents Approached for Neonatal Research in the United States.The Journal of pediatrics · 2024Article
- The economic value of human milk from three cohort studies in Friuli Venezia Giulia, Italy.International breastfeeding journal · 2024Article
- Provision of educational events and subsequent questionnaire response rates in a large-scale birth cohort study from Japan.BMJ open · 2022Article
- Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?Paediatric and perinatal epidemiology · 2022Article
- Motivation to participate and experiences of the informed consent process for randomized clinical trials in emergency obstetric care in Uganda.BMC medical ethics · 2021Article
- The effect of remuneration schedule on data completion and retention in the pregnancy eating attributes study (PEAS).PloS one · 2021Observational
- Informed consent for neonatal trials: practical points to consider and a check list.BMJ paediatrics open · 2020Review
- Article
- Pregnant women's experiences and perceptions of participating in the EVERREST prospective study; a qualitative study.BMC pregnancy and childbirth · 2019Article
- A qualitative study on stakeholders' views on the participation of pregnant women in the APOSTEL VI study: a low-risk obstetrical RCT.BMC pregnancy and childbirth · 2019Article
- KUNO-Kids birth cohort study: rationale, design, and cohort description.Molecular and cellular pediatrics · 2019Article
- Survey of motivation to participate in a birth cohort.Journal of human genetics · 2016Article
- Principal components analysis to identify influences on research communication and engagement during an environmental disaster.BMJ open · 2016Article
- Understanding motivations to participate in an observational research study: Why do patients enroll?Social work in health care · 2016Article
- Article
- Participation of people living in rural areas of Eskisehir province in field researches, and factors affecting their rates of participation.Northern clinics of Istanbul · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLittle is known about reasons that influence parents' decision to participate in studies enrolling healthy children. The aim of this observational study was to verify the reasons that lead pregnant women to give their consent or to refuse participation to a newborn cohort study with a long follow up time.
methodsTo prospectively investigate the reasons that lead women to participate, to refuse the participation or to withdraw from a newborn cohort study, three different questionnaires were administered to pregnant women contacted or enrolled in the Phime cohort study, carried out in an Italian Hospital from 2007 to 2010.
resultsPhime study participation was refused by 304 women and 145 withdrew their consent during the follow up. All these women filled in the related questionnaires. Within 632 mothers in follow up at 18 months, 430 filled in the questionnaire on motivation to participate: 97% stated that the main reason was to contribute to research; 96% and 90% stated that they wanted to benefit future babies' and mothers' health. Ninety-six percent of women would appreciate to know the results of analysis carried out on biological samples collected and of the overall study results. One third of the mothers (37%) wanted to be involved in the definition of future similar studies, bringing their experience and their views. Within the 304 women who refused participation, 56% stated that the study was too demanding, 26% was not interested in participating and 18% was concerned about the need to collect biological samples and to be submitted to neurocognitive tests. Fifty-two percent of 145 women who withdrew after enrollment stated that the study was too demanding (52%), and 6% was concerned about the biological samples collection.
conclusionsThe altruistic reason appears to be the main reported by women to decide to participate in a newborn cohort study. The fact that the study was too demanding and the need to collect biological samples are important reasons that lead women to refuse participation or to withdraw from the study. An adequate communication on these aspects should minimize difficulties in enrolment and losses to follow up.
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