University of Oulu

Marques SCS, Doetsch J, Brødsgaard A, Cuttini M, Draper ES, Kajantie E, Lebeer J, van der Pal S, Pedersen P, RECAP - WP6 QS Work Group, Barros H. Improving Understanding of Participation and Attrition Phenomena in European Cohort Studies: Protocol for a Multi-Situated Qualitative Study. JMIR Res Protoc 2020;9(7):e14997,

Improving understanding of participation and attrition phenomena in European cohort studies : protocol for a multi-situated qualitative study

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Author: Marques, Sandra C. S.1,2; Doetsch, Julia1,3; Brødsgaard, Anne4;
Organizations: 1EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Universidade do Porto, Porto, Portugal
2Centro em Rede de Investigação em Antropologia, Instituto Universitário de Lisboa, Lisbon, Portugal
3School of Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, Netherlands
4Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager Hvidovre, Copenhagen, Denmark
5Research Unit of Perinatal Epidemiology, Clinical Care and Management Innovation Research Area, Ospedale Pediatrico Bambino GesùInstitute forResearch Hospitalization and Health Care, Rome, Italy
6Department of Health Sciences, College of Life Sciences, University of Leicester, Leicester, United Kingdom
7Public Health Promotion Unit, National Institute for Health and Welfare, Helsinki, Finland
8PEDEGO Research Unit, MRC Oulu, University of Oulu and Oulu University Hospital, Oulu, Finland
9Department of Clinical and Molecular Medicine, Norwegian University for Science and Technology, Trondheim, Norway
10Children’s Hospital, Helsinki University Hospital, Helsinki, Finland
11Department ELIZA Primary & Interdisciplinary Care, Faculty of Medicine & Health Sciences University of Antwerp, Antwerp, Belgium
12TNO Child Health, Leiden, Netherlands
13Departamento de Ciências da Saúde Pública e Forenses e Educação Médica, Faculdade de Medicina, Universidade do Porto, Porto, Portugal
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 0.1 MB)
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Language: English
Published: JMIR Publications, 2020
Publish Date: 2021-02-18


Background: Cohort studies represent a strong methodology for increasing one’s understanding of human life-course development and etiological mechanisms. Retention of participants, especially during long follow-up periods, is, however, a major challenge. A better understanding of the motives for participation and attrition in cohort studies in diverse sociogeographic and cultural settings is needed, as this information is most useful in developing effective retention strategies.

Objective: This study aims to improve our understanding of participation and attrition phenomena in a European cohort study of very preterm/very-low-birth-weight (VPT/VLBW) infants from various sociogeographic and cultural settings to better understand variability and ultimately contribute to developing novel and more “in-context” strategies to improve retention.

Methods: This study uses a triangulation of multisituated methods to collect data on various cohorts in the Research on European Children and Adults Born Preterm (RECAP) network, which include focus group discussions, individual semidriven interviews, and a collaborative, reflexive visual methodology (participant-generated VideoStories) with relevant key actors involved with these cohort studies such as adult participants, parents (caregivers), cohort staff, health care professionals, and academic researchers. The methodological strategy aims to provide a shared flexible framework of various qualitatively driven methods to collect data on VPT/VLBW adult and child cohorts, from which research partners may choose and combine those most pertinent to apply in their own specific contexts. Data from all sources and sites will be submitted to a triangulation of phenomenological thematic analysis with discourse analysis.

Results: As of January 2020, in this study, we enrolled 92 participants variously involved with child and adult RECAP partnering cohorts from six countries. Multisite enrollment and data collection are expected to be completed in all seven study settings by June 2020. Findings will be reported in future publications.

Conclusions: Qualitative research methods are a useful complement for enriching and illuminating quantitative results. We expect that opting for a multisituated study approach addressing the interplay of the lived experience of individuals in both researcher and researched stances of particular cohort study settings will contribute to filling some gaps in the understanding of participation variability and effectiveness of different implemented strategies in context. Moreover, health research subjects have traditionally been positioned as passive objects of study rather than active participants, even though they have the greatest stake in improving health care policies and practices. Including collaborative methods allows us to counteract the “top-down” model by handing over some research control to the very people who are providing the data on which research findings will be based while also acknowledging the value of their involvement.

International Registered Report Identifier (IRRID): DERR1-10.2196/14997

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Series: JMIR research protocols
ISSN: 1929-0748
ISSN-E: 1929-0748
ISSN-L: 1929-0748
Volume: 9
Issue: 7
Article number: e14997
DOI: 10.2196/14997
Type of Publication: A1 Journal article – refereed
Field of Science: 3141 Health care science
Funding: We acknowledge funding from the European Union’s Horizon 2020 research and innovation program under grant agreement no. 733280.
Copyright information: © Sandra C S Marques, Julia Doetsch, Anne Brødsgaard, Marina Cuttini, Elizabeth S Draper, Eero Kajantie, Jo Lebeer, Sylvia van der Pal, Pernille Pedersen, RECAP - WP6 QS Work Group, Henrique Barros. Originally published in JMIR Research Protocols (, 15.07.2020. This is an open-access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on, as well as this copyright and license information must be included.