University of Oulu

Marques, S.C.S., Doetsch, J., Abate, G. et al. Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchers. BMC Med Res Methodol 21, 19 (2021). https://doi.org/10.1186/s12874-020-01206-5

Understanding participation in European cohort studies of preterm children : the views of parents, healthcare professionals and researchers

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Author: Marques, Sandra C. S.; Doetsch, Julia; Abate, Georgia;
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 0.6 MB)
Persistent link: http://urn.fi/urn:nbn:fi-fe2021092046663
Language: English
Published: Springer Nature, 2021
Publish Date: 2021-09-20
Description:

Abstract

Background: Retention of participants in cohort studies is a major challenge. A better understanding of all elements involved in participation and attrition phenomena in particular settings is needed to develop effective retention strategies. The study aimed to achieve an in-depth understanding of participant retention in longitudinal cohorts focusing on participants’ and researcher’s perspectives, across three diverse socio-geographic and cultural settings.

Methods: This study used a triangulation of multi-situated methods to collect data on cohort studies of children born with less than 32 weeks of gestation in Denmark, Italy and Portugal. It included focus groups and individual semi-driven interviewing with involved key actors (i.e. parents, staff, healthcare professionals, researchers) and a collaborative visual methodology. A purposive sample of 48 key actors (n = 13 in Denmark; n = 13 in Italy; n = 22 in Portugal) was collected. A triangulation of phenomenological thematic analysis with discourse analysis was applied. Cross-contextual and context-specific situational elements involved in participation and attrition phenomena in these child cohorts were identified at various levels and stages.

Results: Main findings included: situational challenges affecting potential and range of possibilities for implementation strategies (geopolitical environment, societal changes, research funding models); situational elements related to particular strategies acting as deterrents (postal questionnaires) and facilitators (multiple flexible strategies, reminders, regular interaction); main motivations to enrol and participate (altruism/solidarity and gratitude/sense of duty to reciprocate); main motivational deterrents to participate to follow-up waves (lack of bonding, insufficient feedback); entanglement of clinical and research follow-up as facilitator and deterrent.

Conclusions: The multi-situated approach used, addressing the interplay of the lived experience of individuals, was of most value to understand participation variability under different implemented strategies in-context. Cross-contextual and context-specific situational elements that have been influential factors towards participation and attrition in the cohorts were identified.

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Group authorship collaboration RECAP Preterm-WP6 QS Work Group: Sandra CS Marques (CRIA, Instituto Universitário de Lisboa, Portugal; EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Portugal), Julia Doetsch (EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Portugal), Raquel Teixeira (EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Portugal); Georgia Abate, Grazia Colombo and Marina Cuttini (Clinical Care and Management Innovation Research Area, Bambino Gesù Children’s Hospital, IRCCS, Rome, Italy); Anne Brødsgaard (Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager Hvidovre, Denmark; Department of Public Health, HEALTH, Aarhus University, Denmark); Elizabeth S Draper (Department of Health Sciences, College of Life Sciences, University of Leicester, United Kingdom); Sylvia van der Pal and Ilona Wildeman (TNO-Nederlandse Organisatie voor Toegepast Natuurwetenschappelijk Onderzoek, The Netherlands); Pernille Pedersen (Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager Hvidovre, Denmark); Kari Anne I Evensen, Ann-Mari Brubakk and Marit S Indredavik (Department of Clinical and Molecular Medicine, NTNU–Norwegian University of Science and Technology, Norway); Eero Kajantie (Public Health Promotion Unit, National Institute for Health and Welfare, Helsinki and Oulu, Finland; PEDEGO Research Unit, MRC Oulu, Oulu University Hospital and University of Oulu, Finland; Children’s Hospital, Helsinki University Hospital and University of Helsinki, Finland; Department of Clinical and Molecular Medicine, NTNU-Norwegian University of Science and Technology, Norway); Eeva Virtanen (Public Health Promotion Unit, National Institute for Health and Welfare, Helsinki and Oulu, Finland); Jo Lebeer; Vicky Hennissen; Iemke Sarrechia (Department FAMPOP Family Medicine & Population Health, Faculty of Medicine & Health Sciences University of Antwerp, Belgium) and Henrique Barros (Departamento de Ciências da Saúde Pública e Forenses e Educação Médica, Faculdade de Medicina, Universidade do Porto, Portugal; EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Portugal). All named researchers contributed to the development of the study protocol and/or its local implementation.

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Series: BMC medical research methodology
ISSN: 1471-2288
ISSN-E: 1471-2288
ISSN-L: 1471-2288
Volume: 21
Article number: 19
DOI: 10.1186/s12874-020-01206-5
OADOI: https://oadoi.org/10.1186/s12874-020-01206-5
Type of Publication: A1 Journal article – refereed
Field of Science: 3123 Gynaecology and paediatrics
Subjects:
Funding: This project, study, the design of the study and collection, analysis, and interpretation of data and in writing the manuscript, has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 733280. During the article writing process, the salary of SM and JD was paid by the RECAP preterm project. This work is also financed by national funds of FCT – Fundação para a Ciência e Tecnologia I.P., the Unidade de Investigação em Epidemiologia (EPIUnit) - Instituto de Saúde Pública da Universidade do Porto (ISPUP) within the scope of the UIDB/04750/2020 project.
Copyright information: © The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
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