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Title
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Understanding participation in European cohort studies of preterm children : the views of parents, healthcare professionals and researchers
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Author
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Institution/Organisation
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RECAP Preterm-WP6 QS Work Group
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Abstract
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| 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 contextspecific situational elements that have been influential factors towards participation and attrition in the cohorts were identified |
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Language
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English
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Source (journal)
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BMC medical research methodology. - London
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Publication
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London
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2021
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ISSN
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1471-2288
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DOI
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10.1186/S12874-020-01206-5
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Volume/pages
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21
:1
(2021)
, 14 p.
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Article Reference
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19
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ISI
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000607163600001
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Pubmed ID
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33430773
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Medium
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E-only publicatie
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Full text (Publisher's DOI)
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Full text (open access)
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