How are European birth-cohort studies engaging and consulting with young cohort members?

Abstract

BackgroundBirth cohort studies, where parents consent for their child to be enrolled in a longitudinal study prior to or soon after birth, are a powerful study design in epidemiology and developmental research. Participation often continues into adulthood. Where participants are enrolled as infants, provision should be made for consent, consultation and involvement in study design as they age. This study aims to audit and describe the extent and types of consultation and engagement currently used in birth cohorts in Europe.MethodsSeventy study groups (representing 84 cohorts) were contacted to ask about their practice in engaging and involving study members. Information was gathered from study websites and publications, 15 cohorts provided additional information via email and 17 cohorts were interviewed over the phone.ResultsThe cohorts identified confirm the growth of this study design, with more than half beginning since 1990, and 4 since 2011. Most studies maintain a website open to the general public, although many are written for the scientific community only. Five studies have web pages specifically for young cohort members and one study provides a dedicated page for fathers. Cohorts send newsletters, cards, and summaries of findings to participants to stay in touch. Six cohorts use Facebook for this purpose. Five cohorts provide feedback opportunities for participants after completing a round of data collection. We know of just 8 cohorts who have a mechanism for consulting with parents and 3 a mechanism for consulting with young people themselves, although these were ‘one off’ consultations for some groups. Barriers to further consultation with cohort members were: concerns about impact on quality of research, ethical constraints, resource limitations, lack of importance, and previous adverse experiences.ConclusionsAlthough the children in some of the cohorts are still young (born in the last 10 years) many are old enough to include some element of consultation. Barriers to greater participation identified here have been overcome in some cohorts and in other fields. Within the scope of their funding and resources, birth cohort studies should consider ways in which they could increase engagement, consultation, and co-production with research participants.

Where We Used to Live: Validating Retrospective Measures of Childhood Neighborhood Context for Life Course Epidemiologic Studies

“…Although influential birth cohort studies have been established in Europe, [ 36 , 37 ] most cohort studies in the US have enrolled adults, and older adults at that. Although some US prospective cohort studies have begun in childhood, span a long period of time, and have a focus on health (Wisconsin Longitudinal Study), many have only limited health measures, or the current age for adult disease follow up remains relatively young (Add Health, National Longitudinal Study of Youth; Early Childhood Longitudinal Study; Panel Study of Income Dynamics; National Children’s Study).…”

Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort

“…Such techniques include mail surveys, telephone surveys, birthday cards, sending mobile phone reminders and newsletters [18]. Follow-up rates of cohorts in developing populations with conditions in contrast to the ABC study are similar or higher than our study.…”

A study on the factors affecting the follow-up participation in birth cohorts

“…According to the study published by Lucas et al [9], most European birth cohort studies are working to increase the participation rate of cohort subjects, and it has been reported that efforts have been made to increase participation through the operation of “research websites.” The research teams of the cohorts sent newsletters, cards, and study results to subjects in order to maintain contact and some studies even utilized social networks, but there did not appear to be much active communication, such as taking the opinions of the subjects into account. Analysis in this study found that the following are barriers that affect the continuous participation in surveys: lack of trust in the quality of the study, ethical limitations, lack of resources, absence of priorities, negative experience in previous studies, etc.…”