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

Publikation: Bidrag til tidsskrift/Konferencebidrag i tidsskrift /Bidrag til avisTidsskriftartikelForskningpeer review


  • Sandra C.S. Marques, University of Porto, University Institute of Lisbon
  • ,
  • Julia Doetsch, University of Porto
  • ,
  • Georgia Abate, IRCCS Ospedale pediatrico Bambino Gesù - Roma
  • ,
  • Anne Brødsgaard
  • Grazia Colombo, IRCCS Ospedale pediatrico Bambino Gesù - Roma
  • ,
  • Marina Cuttini, IRCCS Ospedale pediatrico Bambino Gesù - Roma
  • ,
  • Pernille Pedersen, Københavns Universitet
  • ,
  • Henrique Barros, University of Porto
  • ,
  • on behalf of RECAP Preterm-WP6 QS Work Group

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.

TidsskriftBMC Medical Research Methodology
Antal sider14
StatusUdgivet - jan. 2021

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