Abstract
BackgroundRetention 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.MethodsThis 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.ResultsMain 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.ConclusionsThe 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.
Highlights
Retention of participants in cohort studies is a major challenge
Project participants The study was developed under the” Research on European Children and Adults born Preterm” project (RECAP Preterm), which joined 20 population-based cohorts from 13 European countries, assembling data of very preterm and/or very low birth weight (VPT: < 32 weeks of gestation /Very preterm and/or very low birth weight (VLBW): < 1500 g) individuals followed since birth
Effective Perinatal Intensive Care in Europe (EPICE)/SHIPS: one European study, three different approaches Losses due to failure to locate, contact or to respond due to burdensome or unsuitable follow-up procedures emerged as major concern for professionals in all settings (n = 22/22)
Summary
A better understanding of all elements involved in participation and attrition phenomena in particular settings is needed to develop effective retention strategies. Population-based cohort studies are a powerful research design to understand human life-course development and causal mechanisms [1, 2]. Cohorts are complex structures that require continued involvement of both cohort participants, and researchers, ongoing funding and supporting infrastructure to ensure continuous attention to timeliness, attrition and quality of collected information. Those requirements are indispensable to meet high scientific standards and to allow the appropriate translation of findings into clinical practice and policy actions. Approaches to this issue necessarily vary according to international specificities in research regulations and contextual differences
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