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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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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