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Children and Youth cohort studies: developments and innovations |
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| Session Organisers | Professor Lisa Calderwood (UCL Centre for Longitudinal Studies) Dr Larissa Pople (UCL Centre for Longitudinal Studies) |
| Time | Tuesday 18 July, 09:00 - 10:30 |
| Room | |
Longitudinal cohort studies of children and youth are a core part of the survey infrastructure in many countries, and in the light of the COVID-19 pandemic there has been a renewed focus on such studies as vital evidence bases for child and adolescent research including on well-being, education and labour market. However, the broader context of such studies is increasing challenges with ensuring population representativeness, participant engagement and inclusivity, and the need for sufficient analytical power for research about hard-to-reach groups to inform vital policy questions.
This session will cover recent developments and innovations in child and youth cohort studies. This includes study design approaches for newly established child and youth cohorts, as well as developments in existing cohort studies who survey children and young people.
The session aims to showcase recent developments in the research landscape around child and youth cohorts, and to explore survey methodological issues around surveying children and young people.
Submissions are particularly welcomed on:
- design and implementation of new child and youth cohort studies
- developments in existing child and youth cohort studies
- giving children and young people a voice in study design, and participant co-production
- measurement in child and youth cohorts, including questionnaires and direct assessments
- collecting data on sensitive topics from children and young people
- data collection innovations and mode
- inclusivity in child and youth cohort studies
- assessing the reliability and validity of children and young people’s self-reports
- preventing non-response and innovative approaches to participant engagement
- the challenges of retaining young people’s contact and interest in surveys over time
- ethical issues in involving children and young people in surveys, including informed consent and young people’s rights.
- addressing international comparisons and data harmonisation
Submissions need not be restricted to these specific examples.
Keywords: children, youth, cohort studies
Dr Sabine Düval (Deutsches Jugendinstitut München) - Presenting Author
Professor Susanne Kuger (Deutsches Jugendinstitut München)
Ensuring international comparability is crucial for (longitudinal) research on child well-being across diverse cultural and national contexts. This study provides a practical guide to strategies like data harmonization aimed at improving the reliability and validity of cross-national studies. Key challenges are identified, including cultural differences in the understanding of child well-being, variations in data collection instruments, and discrepancies in sampling frameworks. Institutional and regulatory differences that affect data comparability in longitudinal studies are also addressed.
To overcome these challenges, the chapter emphasizes the importance of standardized survey instruments and rigorous translation protocols. These efforts ensure consistency while accounting for cultural and contextual differences. Harmonizing sampling frameworks and developing protocols to address discrepancies are highlighted as critical steps for achieving robust international comparability.
In a case study, we use existing data from the international TIMSS study, specifically drawing on items that measure child well-being. The items focus on well-being at school (e.g., "I like being in school" and "I feel safe when I am at school") and bullying (e.g., "Made fun of me or called me names" and "Left me out of their games or activities"). We perform both exploratory and confirmatory factor analyses (EFA/CFA) across Ireland, Germany, France, Norway, and Slovenia to assess whether these items consistently capture child well-being across these countries.
Our findings provide critical insights into the cross-national validity of these well-being measures and highlight the challenges of ensuring measurement equivalence while balancing cultural specificity. By tackling these methodological and theoretical challenges, this study offers practical insights into designing and implementing cross-national child cohort studies. It underscores the importance of addressing comparability issues to strengthen future research on child well-being in diverse cultural and national contexts.
Dr Katie O Farrell (Central Statistics Office) - Presenting Author
Growing Up in Ireland (GUI) is the national, longitudinal study of children and young people in Ireland. This landmark survey is a principal data source for issues facing children and young people in Ireland today. The survey covers a broad range of themes and is composed of three cohorts: Cohort ’98 who joined the study aged nine and were 25 at the last wave of data collection; Cohort ’08 who joined the study at nine months and will be 17/18 at their next wave of data collection; and Cohort ’24, the new cohort of nine-month-old infants for whom Wave One data collection is currently ongoing.
With these cohorts spanning multiple life stages including the transition into adulthood, GUI faces challenges on multiple fronts. This paper will discuss these challenges and the innovative developments GUI are considering to meet them, which include, but are not limited to, delivering a relevant and well-designed instrument that balances timely delivery to meet stakeholder needs against respondent burden, achieving and maintaining population representativeness, and understanding and motivating respondent engagement.
Mr Martin Wood (National Centre for Social Research)
Ms Jules Allen (National Centre for Social Research)
Ms Line Knudsen (National Centre for Social Research) - Presenting Author
The Five to Twelve study is funded by the Department for Education in the UK and follows a cohort of children through their primary school education in England. The study aims to deepen our understanding of how inequalities in educational attainment and wellbeing develop in this period. It is one of a set of cohort studies covering early years to post-16 education.
Data collection for the first year of the study was completed during 2024 with over 8,600 interviews completed in-home with mothers/fathers/carers, alongside a set of cognitive assessments with the child cohort member (aged 5 or 6 at the time). The child’s class teacher was also included, completing a paper questionnaire about the child.
This paper will describe the transition from CAPI to a web and CATI data collection design in Year 2 (aged 6 or 7). Mothers and fathers and carers in the child’s main home were again included, as well as other parents living separately. The child’s teacher was also approached again in this wave.
Data collection for Year 2 will be completed in the first half of 2025 and the paper will discuss approaches to maximising response (communications strategy, incentives, modes) and resulting response patterns (with a particular focus on low-income families and children who had been identified as having special educational needs). It will discuss the considerations for a complex longitudinal study with a web-first design.
Professor Lisa Calderwood (University College London) - Presenting Author
Professor Alissa Goodman (University College London)
Professor Pasco Fearon (University College London and University of Cambridge)
Ms Karen Dennison (University College London)
Dr Erica Wong (University College London)
Dr Alyce Raybould (University College London)
Ms Julia Pye (Ipsos)
Ms Sam Clemens (Ipsos)
Longitudinal birth cohort studies are vital for understanding the development and outcomes of successive generations of children, though there is increasing recognition that often those families who are of most interest from a research and policy perspective are less likely to be recruited and retained in national studies. The UK Early Life Cohort Feasibility Study (ELC-FS), funded by the Economic and Social Research Council, tested the feasibility of a new UK-wide birth cohort study of several thousand babies with a target age of 9 months. It is led by the Centre for Longitudinal Studies at University College London. The fieldwork, carried out by Ipsos, started in September 2023 in England, Wales and Scotland, and April 2024 in Northern Ireland. Fieldwork ended in summer 2024.
The study has strong focus on inclusivity and is designed to maximise representation of ‘less often heard’ groups. It includes sample boosts of babies from disadvantaged and ethnic minority families, as well as Scotland, Wales and Northern Ireland, and direct recruitment of fathers including those living in their own households. This was possible through the use of birth registrations as a sampling frame.
The study involved interviews with mothers and fathers about children’s social and economic environments, their health, well-being and development. We also collected saliva and oral fluid swabs for DNA extraction with a randomised subgroup, and record linkage consents where we experimentally tested different consent wording. Interviews were carried out primarily face-to-face, with web, phone and video interviewing also used. We also included experiments to test the effectiveness of targeted differential incentives and conditional incentives.
This paper will give an overview of the design and implementation of the ELC-FS. We will present findings relating to response rates, data quality, and the experimental components of the feasibility study.
Professor Gary Pollock (Manchester Metropolitan University)
Professor Toni Babarovic (Ivo Pilar Institute) - Presenting Author
Dr Ognjen Obucina (INED)
Growing Up In Digital Europe (GUIDE), an input harmonised cross-national longitudinal study of child wellbeing, completed a successful pilot survey in five countries in 2023-4. Using EU funding from project COORDINATE and national funding from Slovenia, fieldwork instruments were developed, translated from English to national languages, and data was collected in Croatia, Finland, France, Ireland and Slovenia. Most of the full wave research design for GUIDE was included in the pilot survey including finalising questionnaire content, the translation protocol, CAPI and CAVI development and interviewer training. In this paper we begin by presenting the GUIDE approach to piloting, which was developed in a previous project, and reflect on how it could be adapted for the future. We then describe the experiences of the pilot survey in the five countries and show how it has helped to highlight specific issues that need to be addressed for full wave data collection. We then discuss the fieldwork, the sampling strategies and modes of data collection used and reflect upon how these may change in the future. Aspects of the data collected in the pilots are presented in terms of further adaptations that are likely to be required, for example through testing the robustness of the measures and the validity of the responses, as well as how we can develop better approaches to respondent engagement. The experiences of the pilots have provided valuable insights which will help in the planning for full wave data collection in the future.
Ms Bridget Hearne (CSO) - Presenting Author
Growing Up in Ireland (GUI) is the national longitudinal study of young people and children in Ireland. This landmark study represents a very significant investment by the Irish State in high quality research and data on the lives of children, young people and their families. GUI is a principal data source for issues facing children and young people in Ireland today to inform effective and responsive policy making and service development. The main survey themes are: education and cognitive development, physical health and well-being, socio-emotional well-being, sociodemographic factors and family structure; relationships, and social participation.
GUI was originally established to track over 20,000 children and families from two cohorts: an infant group and a child group. In the 16 years that have now passed since the original infant cohort was recruited, Ireland has undergone significant demographic, social, and economic change.
In 2022 the decision was made to increase the size of GUI to include an additional birth cohort, Cohort ’24, to understand the impact of these changes in Irish society on the development and outcomes for children in Ireland.
Cohort ’24 will involve the recruitment of a new set of 9 month old babies (born in 2024) and will be comparable in scale to the existing (Cohort 08) infant cohort.
To facilitate the development of the survey instrument for Cohort ’24 at 9 months, pilot data collection was undertaken throughout 2023. This extensive pilot trialed the key design elements of new cohort: the use of secondary data sources, data linkage and the harmonization with other data collections.
This paper will share the lessons learned from the Cohort ‘24 at 9 months pilot data collection as well as the impact these findings had on the Cohort ‘24 main data collection instrumentation, processes and procedures.
Mrs Lucy Haselden (Centre for Longitudinal Studies, UCL) - Presenting Author
Mr Matt Brown (Centre for Longitudinal Studies, UCL)
Ms Michaela Sedovic (Centre for Longitudinal Studies, UCL)
Professor Emla Fitzsimons (Centre for Longitudinal Studies, UCL)
Dr Larissa Pople (Centre for Longitudinal Studies, UCL)
Mr Nicholas Gilby (Ipsos)
Mrs Kirsty Burston (Ipsos)
Many child/youth cohort studies aim to track participants into adulthood. The transition from childhood to adulthood presents challenges due to shifts in participants' priorities, increased mobility, and reduced family involvement. As young adults gain independence, maintaining their engagement requires adapting strategies to ensure continued participation.
The UK Millennium Cohort Study (MCS) is a multi-disciplinary longitudinal study following the lives of approximately 19,000 children born between 2000 and 2002 across the UK. Seven major waves of data collection took place between 2001 and 2018, when study members were 17. Fieldwork for the eighth wave, the Age 23 Survey, was recently completed.
The Age 23 Survey marks a key transition point for MCS. In prior waves, parents were integral, not only as interviewees but also as facilitators who played a key role in securing the participation of study members. However, at Age 23, parents are not interviewed, and study members are contacted independently for the first time. Participants are highly mobile and leading busy lives, so tracking them and maximizing engagement during this key phase of the study would be challenging.
This talk will provide an overview of the Age 23 Survey, focusing particularly on participant engagement strategies. We will discuss findings from qualitative research and a feedback survey conducted with participants prior to launch. These efforts aimed to understand the evolving needs and expectations of the cohort. We will describe how insights from this research informed study design choices, including survey mode, questionnaire content, contact strategies, incentives, and the development of communication materials.
We will discuss the key challenges encountered during fieldwork, the steps taken to address them and lessons learned. This talk will provide valuable insights for other studies navigating the transition into adulthood, highlighting effective strategies for maintaining participant engagement and ensuring high quality data collection.
Dr Jessica Jones (CDC/ National Center for Health Statistic) - Presenting Author
Dr Anika Schenck-fontaine (LIfBi - Leibniz Institute for Educational Trajectories)
Dr Olivia Sappenfield (Health Resources and Services Administration)
Dr Scott Albrecht (U.S. Census Bureau)
Dr Reem Ghandour (Health Resources and Services Administration)
The National Survey of Children’s Health Longitudinal Cohort (NSCH-LC) is a probability-based, nationally representative study designed to assess the long-term impacts of the COVID-19 pandemic on children throughout the United States. In response to the pandemic, the NSCH-LC expanded upon the existing infrastructure of the cross-sectional National Survey of Children’s Health (NSCH) to create a cohort study that could provide repeated measurement of children's mental, emotional, and behavioral health. Data were collected using parental report both pre-pandemic (2018–2019) as part of the annual NSCH and post-pandemic (2023–2024) on over 20,000 children.
This presentation will outline the design, implementation, and methodological innovations of the NSCH-LC, highlighting the complexities and challenges encountered in transitioning from a cross-sectional to a longitudinal study. Particular attention will be given to the efforts to locate past respondents, address incomplete respondent information, and conduct respondent verification using both web and paper questionnaires. The design and content of the questionnaires will also be described in detail, to include both the selection of repeated measures and pandemic-related variables such as remote learning, disruptions to healthcare access, and family stressors. Lastly, presenters will provide an overview of how attendees can access this data for research.
By sharing this overview of the NSCH-LC design, implementation, and data availability, the presentation will showcase lessons learned from an innovative approach to developing a new longitudinal cohort study of children given limited resources based on existing survey infrastructures and will promote additional research on the long-term effects of the COVID-19 pandemic. This presentation will also demonstrate how federal data infrastructure can be leveraged to assess societal disruptions.
Dr Larissa Pople (UCL Centre for Longitudinal Studies) - Presenting Author
Professor Emla Fitzsimons (UCL Centre for Longitudinal Studies)
Professor Jess Deighton (Anna Freud)
Dr Tanya Lereya (Anna Freud)
Dr Jess Stepanous (Anna Freud)
Mr Nicholas Gilby (Ipsos)
Ms Julia Pye (Ipsos)
Ms Christy Lai (Ipsos)
Growing up in the 2020s is a new five-year longitudinal study of secondary-school children in England commissioned by the Department for Education and run in consortium by the UCL Centre for Longitudinal Studies, the organisation Anna Freud and Ipsos. It is part of a series of national longitudinal studies that includes the Five to Twelve study of primary-school children and Children of the 2020s, focused on the first five years.
Growing Up in the 2020s will be a national barometer for the wellbeing and educational progress of young people in England throughout secondary school and beyond. Today’s adolescents face unique challenges compared to previous generations, growing up amid rapid technological advancements, shifting social norms, and global crises like climate change and rising mental health issues. Data from the study has the potential to inform prevention strategies to help identify those at risk of poorer outcomes early and ensure they are supported accordingly.
A sample of c20,000 children aged 12/13 years in England have been selected from the National Pupil Database, with a higher selection probability for pupils eligible for free school meals. Approximately 7,750 children and parents are expected to participate at wave 1 with approximately 4,000 paired child-parent interviews anticipated at wave 4. Wave 1 will be conducted face-to-face while waves 2-4 will use a sequential mixed mode approach (online>telephone at waves 2-3 and online>face-to-face at wave 4).
An innovative element is the Iris sub-study, which will track the internet usage of a sub-sample of c400 young people on their personal mobile phone for 4 weeks.
This presentation will provide an opportunity to learn more about this study, including its scientific objectives, the study design, questionnaire content and response rates.
Professor Ben Edwards (Australian National University) - Presenting Author
Ms Kate Doery (Australian National University)
Dr Jessica Arnup (Australian National University)
Ms Natasha Vickers (Social Research Centre)
Mr Patrick Scott (Social Research Centre)
GENERATION is a cohort study following the journey of young Australians, as they transition to life beyond school. Youth are particularly difficult to main contact and obtain survey responses in longitudinal surveys as they undergo several life transitions over a short period of time that means that there is a high level of mobility and contact details can change. Moreover, longitudinal surveys usually show a similar pattern over time with some significant attrition between Wave 1 and 2, and then much smaller attrition over subsequent waves.
In this paper, we report on results from our Wave 3 survey where the number of youth surveyed increased by 14% (an increase of 495 surveys) using the same sequential mixed mode approach as in Wave 2. Wave 3 was characterised by different levels of response maximisation with the most engaged participants from prior waves receiving more emails and SMS reminders. All potential participants with a registered address also received a letter for the first time. For Wave 3 there was a key focus on the type of messaging informing young people of where how the information being used through engaging stories as well as placing a strong emphasis on their unique contribution.
The paper will systematically test potential explanations for the increased response rates, such the effectiveness of timing, sequence and messaging of emails and SMS for particular sub-groups in the survey, timing of the survey during the school year, maturity of students and other personality characteristics as well demographic characteristics of the students. We highlight broader lessons for the research community about engagement with youth.
Mr Piotr Dworak (University of Michigan - Institute for Social Research) - Presenting Author
The Child Development Supplement (CDS) is a research component of the Panel Study of Income Dynamics (PSID) collecting information on children and caregivers in families participating in PSID. Approximately every 5 years, CDS interviews primary caregivers and, with their permission, adolescents aged 12-17. In prior waves, adolescents were asked to complete a telephone interview. In 2024, CDS introduced an option for adolescents to complete a Web survey. Some 889 primary caregivers were asked for permission to interview their 1,369 adolescent children and offered Web as an option and for a preferred way to communicate with adolescents (i.e., how to send email and text invitations and reminders to complete the Web survey). This paper focuses on addressing unique logistical challenges related to obtaining permission from the primary caregiver, communicating with adolescents, and meeting requirements of research with minors. We also report caregiver consent rates, the rates of adolescent email and cell phone acquisition, adolescent response rates, and discuss lessons learned.
Dr Marialivia Bernardi (University College London) - Presenting Author
Dr Laurel Fish (University College London)
Ms Sarah Knibbs (Ipsos)
Professor Alissa Goodman (University College London)
Professor Lisa Calderwood (University College London)
Professor Pasco Fearon (University College London)
Children of the 2020s (COT20s) is a new birth cohort study that will provide evidence on the factors that affect child development and later educational outcomes.
COT20s is a five-wave longitudinal survey of children from nine months to five years with face-to-face surveys at nine months (wave 1) and three years (wave 3). Other waves will use a sequential mixed mode online/telephone design. The target sample size was 8518 at wave 1, aiming for 4142 interviews at wave 5. The study includes an innovative app, BabySteps, enabling collection of developmental and home environment measures in the inter-wave periods, linkage to health and education records, an online survey for a second co-residential parent and/or any own-household parents, and a battery of in-person child development assessments when the children are age 3.
Fieldwork for the wave 3 in-home visit takes place between November 2024 to March 2025. Alongside the typical CAPI-administered survey, this wave of data collection features a host of innovative methodologies including a 5-minute video recording taken on the respondents BabySteps app of the parent and child playing, a set of cognitive assessments administered via the interviewer tablet and a battery of CAPI administered direct assessments with the child, both of which are completed while the primary informant independently completes a CASI questionnaire on their own smart device. Early analysis of wave 3 fieldwork progress indicates good respondent engagement and high completion rates of each of the components of the age 3 visit. Early ongoing quality control monitoring indicate high quality data collection.
This presentation will provide an update on this landmark study with a focus on the design and implementation of the innovative measures implemented in the face-to-face age 3 in-home visit.
Dr Grace Bailey (Swansea University) - Presenting Author
Professor Lucy Griffiths (Swansea University)
In the UK, an increasing number of children are experiencing adversity, often starting very early on in their lives. These children often need help and protection because of the potential risks to their development or health or are at high risk of becoming looked after by local authorities.
Comprehensive national longitudinal data for children facing high levels of adversity is crucial to being able to explore the ongoing and lifelong impact of early experiences on the health and development of these children. A major roadblock to achieving this is the typical exclusion of such children from the UK’s world-leading portfolio of national longitudinal studies of child development. This is largely due to the multiple challenges researchers face in identifying, sampling, and retaining these participants. When they are included, there is usually little information about which children are involved with social services, what help they are getting, and how effective this is.
We aim to understand stakeholder evidence needs and to test the feasibility of an innovative quantitative longitudinal birth cohort study of children at risk of poor outcomes across the UK. To do this, we will engage with policy and academic stakeholders, as well as with care experienced young people and their parents, to deepen our understanding of scientific and policy evidence needs with respect these young children, and to establish examples of best practice and co-production when involving vulnerable children and their families in longitudinal research.
This project will create a blueprint for a new UK-wide longitudinal birth cohort study of children at risk of poor outcomes. Such a study will fill vital evidence gap to help transform our understanding of the risk and prevention strategies urgently required in child welfare service provision to support some of the most vulnerable members of UK society.
Dr Klea Ramaj (Policy Evaluation and Research Unit, Manchester Metropolitan University) - Presenting Author
The purpose of this paper will be to present findings from the COORDINATE Foresight Exercise, which was carried out in 2023-2024. The main aim of this Foresight Exercise was to identify and prioritise future opportunities and challenges related to ethical considerations for developing the Growing Up in Digital Europe (GUIDE) survey and research infrastructure. Signal spotters were recruited through a horizon scanning process from nine countries across Europe. Each signal spotter was asked to provide each country team with insights about ethical challenges that might affect a prospective comparative birth cohort study such as GUIDE. These insights were then analysed by each country team through foresight workshops. The aim of the foresight workshops was to identify themes and categorise them into opportunities and threats. Each team then produced a country report which was sent to the lead project team at Manchester Metropolitan University, who in turn collated and analysed the reports from all the nine countries. The findings from the COORDINATE Foresight Exercise were further discussed with GUIDE’s International Youth Advisory Board. The main future ethical issues that emerged from the COORDINATE Foresight Exercise revolved around migration, technology advancement, social changes (such as increasing inequalities, changes to regulations, and the evolving nature of identities), as well as matters related to data security. This paper will provide a detailed overview of the COORDINATE Foresight Exercise, including the process of data collection, data analysis, as well as the implications of the main findings.
Dr Susan Clifford (Murdoch Children's Research Institute) - Presenting Author
Ms Alisha Gülenç (Murdoch Children's Research Institute)
Mr William Siero (Murdoch Children's Research Institute)
Dr Elizabeth Hughes (Murdoch Children's Research Institute)
Mr Jatender Mohal (Murdoch Children's Research Institute)
Dr Tony Frugier (Murdoch Children's Research Institute)
Ms Naomi Schwarz (Murdoch Children's Research Institute)
Professor Richard Saffery (Murdoch Children's Research Institute)
Professor Sharon Goldfeld (Murdoch Children's Research Institute)
Professor Melissa Wake (Murdoch Children's Research Institute)
BACKGROUND: Generation Victoria (GenV) is Australia’s largest and most inclusive child and parent longitudinal cohort. With >123,000 participants to date, it's the only mega-cohort study capturing pregnancies and births through the COVID19 pandemic. As GenV moves from its Establishment phase towards delivering impact, we share developments and opportunities for collaboration with other cohort studies.
PROGRESS TO DATE: Participant recruitment scaled up from one to 58 birthing hospital/sites over a 9-month Vanguard phase (Dec 2020-Oct 2021). Families of all babies born in Victoria (population 7 million) Oct 2021-Oct 2023 are invited to join. To date, >49,000 children, 49,000 mothers and 25,000 other parents/guardians have been recruited in >70 languages. Our cohort reflects Victoria’s cultural, economic, geographic and social diversity. Biosamples are collected directly from participants and through consented access to residual samples from routine pregnancy/prenatal healthcare tests, with initial bioanalyses underway. Data linkage to the first tranche of State Government datasets (inc. births, deaths, hospital admissions) is complete. Participant online surveys are completed or underway for 8 timepoints between child age 3m-3ys.
NEXT FIVE YEARS: Recruitment is always open to children born in the two-year birth window, including those who later move to Victoria. Our Intervention Hub will support dynamic trials within GenV from 2025. Richer data will be collected via linkage to Federal Government and clinical datasets, and additional surveys. The first data release is scheduled for 2026, launch of our Open Research Asset for 2027, and planning is underway for an Early School Assessment (first child and adult phenotyping wave, 2028-2029).
CONCLUSION: Following successful establishment, GenV is working to maximise its impact over the short and medium term. We will share progress and highlight collaboration opportunities with other cohorts for mutual benefit.