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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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@article{72f4a454499d48a78af5d27bbd6b8105,
title = "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.",
keywords = "Collaborative visual methods, European cohorts, Longitudinal, Multi-situated qualitative study, Participation, Preterm children, Retention",
author = "Marques, {Sandra C S} and Julia Doetsch and Georgia Abate and Anne Br{\o}dsgaard and Grazia Colombo and Marina Cuttini and Pernille Pedersen and Henrique Barros and {RECAP Preterm-WP6 QS Work Group}",
year = "2021",
month = jan,
day = "12",
doi = "10.1186/s12874-020-01206-5",
language = "English",
volume = "21",
pages = "19",
journal = "BMC Medical Research Methodology",
issn = "1471-2288",
publisher = "BioMed Central Ltd",
number = "1",

}

RIS

TY - JOUR

T1 - Understanding participation in European cohort studies of preterm children

T2 - the views of parents, healthcare professionals and researchers

AU - Marques, Sandra C S

AU - Doetsch, Julia

AU - Abate, Georgia

AU - Brødsgaard, Anne

AU - Colombo, Grazia

AU - Cuttini, Marina

AU - Pedersen, Pernille

AU - Barros, Henrique

AU - RECAP Preterm-WP6 QS Work Group

PY - 2021/1/12

Y1 - 2021/1/12

N2 - 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.

AB - 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.

KW - Collaborative visual methods

KW - European cohorts

KW - Longitudinal

KW - Multi-situated qualitative study

KW - Participation

KW - Preterm children

KW - Retention

UR - http://www.scopus.com/inward/record.url?scp=85099211961&partnerID=8YFLogxK

U2 - 10.1186/s12874-020-01206-5

DO - 10.1186/s12874-020-01206-5

M3 - Journal article

C2 - 33430773

VL - 21

SP - 19

JO - BMC Medical Research Methodology

JF - BMC Medical Research Methodology

SN - 1471-2288

IS - 1

M1 - 19

ER -

ID: 61731151