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Children and Youth cohort studies: developments and innovations 3
| Professor Lisa Calderwood (UCL Cente for Longitudinal Studies )
Professor Gary Pollock (Manchester Metropolitan University )
|Friday 21 July, 09:00 - 10:30
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
Professor Ben Edwards (Australian National University) - Presenting Author
Dr Daniel Edwards (Australian Council of Educational Research)
Dr Nikki Honey (Social Research Centre)
Ms Intifar Chowdhury (Australian National University)
Ms Kylie Hillman (Australian Council of Educational Research)
Professor Andrew Norton (Australian National University)
Professor Matthew Gray (Australian National University)
GENERATION is a new study following the journey of young Australians, as they transition to life beyond school. For the next ten years, this national survey aims to track students across Australia to reflect the collective experience of young Australians – inside and outside school, while providing both participants and educators valuable insights into career interests and post-school plans.
Key features in the wave 1 methodology to enhance school participation are discussed including flexibility in survey implementation time and rapid school reports and students to enhance the utility of survey data for school improvement and to support students' subject choices. Another design feature of wave 1 was youth focus groups intended to enhance participation of youth.
There is an explicit focus on capturing policies and groups of young people that have historically been disadvantaged including those from low SES and Aboriginal or Torres Strait Islander backgrounds, those with a disability or chronic illness and those living in regional areas.
The first wave of this national longitudinal study was a school-based survey implemented by a school coordinator from participating schools. All young people aged 15-16 years from participating schools were invited and each school completed a survey focussed on school policies designed and services to address learning losses from the pandemic and address education equity. Implementation commenced just prior to Term 2 at a time when school closures were common, schools had workforce shortages due to infections from the Omicron wave of the pandemic, and consequently schools were closed to research. Despite these considerable challenges over 16,000 students and 295 schools participated. A number of implications for future school-based cohorts of youth will be discussed.
Professor Gary Pollock (Manchester Metropolitan University)
Dr Jennifer Symonds (University College Dublin)
Dr Seaneen Sloan (University College Dublin) - Presenting Author
Evidence based policy making has become an increasingly accepted mantra in government. While it may require a nuanced analysis in order to fully understand how it works in practice, the centrality of evidence to inform a perceived policy benefit demonstrates the need for high quality data that can be integrated into a policy discussion.
The European Union has supported the development of a Europe wide longitudinal survey with a focus on child wellbeing. This survey, Growing Up in Digital Europe (GUIDE), is being piloted in early 2023 and is set to become an important data resource to understand the longitudinal dynamics of wellbeing across Europe for decades to come. It is important to identify the specific value that a longitudinal survey design has in contrast with alternative data collection and collation modes as not all policy areas require longitudinal data.
This presentation reports on the results of the GUIDE pilot survey in Croatia, Finland, France and Ireland and explores the ways in which GUIDE will contribute to different policy related research questions and concludes that increasingly, there are Europe wide policy imperatives which require a comparative longitudinal approach.
Professor Lisa Calderwood (UCL Cente for Longitudinal Studies ) - Presenting Author
Professor Alissa Goodman (UCL Centre for Longitudinal Studies)
Professor Pasco Fearon (UCL and University of Cambridge)
Ms Karen Dennison (UCL Centre for Longitudinal Studies)
Dr Erica Wong (UCL Centre for Longitudinal Studies)
Dr Alyce Raybould (UCL Centre for Longitudinal Studies)
Longitudinal birth cohort studies are vital for understanding the development 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, is testing the feasibility of a new UK-wide birth cohort study. It is led by the Centre for Longitudinal Studies at University College London. It aims to recruit several thousand new babies from across the UK in the first year of life, with a target age at interview of around 9 months, and collect information on their economic and social environments, their health, wellbeing and development. Fieldwork is due to take place in Summer/Autumn 2023 carried out by Ipsos.
The study has strong focus on inclusivity and is designed to include robust representation of traditionally ‘less often heard’ groups. It includes sample boosts of babies born into 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. Data collection will involve interviews with both mothers and fathers, as well as saliva and oral fluid swab collection for DNA extraction with a randomised subgroup, and linkage consents to administrative records. Interviews will be carried out primarily face-to-face, with web and phone also used. We also plan to use experiments to test the effectiveness of targeted differential incentives and conditional incentives.
This paper will give an overview of the design of the ELC-FS, with a focus on methodologically innovative aspects, and present findings from the extensive public engagement and development work which has informed the design.
Ms Sarah Knibbs (Ipsos)
Dr Laurel Fish (University College London)
Dr Marialivia Bernardi (University College London) - Presenting Author
Professor Pasco Fearon (University College London)
Professor Lisa Calderwood (University College London)
Professor Alissa Goodman (University College London)
Ms Kavita Deepchand (Ipsos)
Mr Chris Ferguson (Ipsos)
Ms Tania Borges (Ipsos)
Ms Konstantina Vosnaki (Ipsos)
Children of the 2020s is a new birth cohort study commissioned by the Department for Education in England, conducted by University College London and Ipsos. It will provide evidence on the factors that affect child development.
It 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 enabling collection of developmental and home environment measures, linkage to health and education records, and an online survey for a second co-residential parent and/or any own-household parents.
Fieldwork for wave 1 was carried out in-home in almost 85% of cases between June and November 2022 with remote options (Teams and telephone) also used given Covid-19. The target number of interviews was exceeded (8569), with a response rate of c. 50%. Early analysis of the data shows it being representative and high quality. It was one of the first major studies to return to in-home interviewing in England and demonstrates the success and importance of face-to-face data collection when recruiting to new birth cohorts, when remote methods are becoming more common. Interviews needed to be secured when babies were close to nine months to ensure consistent measurement of outcomes necessitating stringent fieldwork implementation. Respondent communications needed to secure the engagement of a diverse and representative sample of families in the crucial first wave.
This presentation will provide an opportunity to learn more about this landmark study including its design and implementation to maximise response and collect high quality data among families with young children.
Dr Elizabeth Hughes (Murdoch Children's Research Institute)
Dr Susan Clifford (Murdoch Children's Research Institute) - Presenting Author
Dr Suzanne Long (Murdoch Children's Research Institute)
Dr Jatender Mohal (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: Children are well represented in large longitudinal cohorts but their traditional ‘observation only’ approach is not delivering solutions at the scale needed – it’s time to ‘stop watching’ and ‘start fixing’. Generation Victoria (GenV) is Australia’s largest birth and parent cohort. Core to GenV is its whole-of-state reach, inclusivity, and vision to embed causal and interventional studies that drive fast, rigorous, real-life evidence to tackle multiple issues at scale.
METHODS: Parents of every child born over a 2-year period and living in Victoria, Australia, are eligible (n~150,000). Recruitment is face-to-face shortly after birth, with families missed in hospital followed up by phone or online. Parents provide consent to data and biosample (including routine ante- and perinatal samples) linkage, as well as direct collection of additional biosamples (saliva, infant stool, breast milk) and regular surveys via website or App. Over time, participants are invited to co-participate in registries, trials and observational studies embedded within or alongside GenV.
RESULTS: GenV rolled out recruitment to all 58 birthing sites across Victoria in less than a year, and commenced state-wide recruitment in October 2021. By December 2022, >72,000 parents and children had joined. Uniquely, GenV has achieved proportionate Culturally and Linguistically Diverse (>60 languages) and regional/rural uptake; developed its ‘ePhenome’ remote data collection tool; established data, biobanking and integrated studies infrastructure; planned extensive data linkage; and banked >300,000 biosamples. To date, GenV has supported more than 18 stand-alone trials, registries and observational studies.
CONCLUSIONS: GenV’s large longitudinal intervention-capable child and parent cohorts provide unique opportunities to help solve complex issues facing children and adults now and tomorrow. Learnings from GenV’s implementation can benefit future and existing child and adult studies of any size and complexity.