Dataset Information

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

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.

SUBMITTER: Marques SCS

PROVIDER: S-EPMC7802270 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Publications

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

Marques Sandra C S SCS Doetsch Julia J Abate Georgia G Brødsgaard Anne A Colombo Grazia G Cuttini Marina M Pedersen Pernille P Barros Henrique H

BMC medical research methodology 20210112 1

<h4>Background</h4>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.<h4>Methods</h4>This study used ...[more]

PMID: 33430773

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Project description:BackgroundCohort 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.ObjectiveThis 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.MethodsThis 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.ResultsAs 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.ConclusionsQualitative 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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Dataset Information

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

Background

Methods

Results

Conclusions

Publications

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

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