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 understand...
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| Format: | Article |
| Language: | English |
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BMC
2021-01-01
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| Series: | BMC Medical Research Methodology |
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| Online Access: | https://doi.org/10.1186/s12874-020-01206-5 |
| _version_ | 1818821740172673024 |
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| author | Sandra C. S. Marques Julia Doetsch Georgia Abate Anne Brødsgaard Grazia Colombo Marina Cuttini Pernille Pedersen Henrique Barros on behalf of RECAP Preterm-WP6 QS Work Group |
| author_facet | Sandra C. S. Marques Julia Doetsch Georgia Abate Anne Brødsgaard Grazia Colombo Marina Cuttini Pernille Pedersen Henrique Barros on behalf of RECAP Preterm-WP6 QS Work Group |
| author_sort | Sandra C. S. Marques |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-18T23:12:59Z |
| format | Article |
| id | doaj.art-e7a1fb6427af408d9774078ef228c196 |
| institution | Directory Open Access Journal |
| issn | 1471-2288 |
| language | English |
| last_indexed | 2024-12-18T23:12:59Z |
| publishDate | 2021-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Research Methodology |
| spelling | doaj.art-e7a1fb6427af408d9774078ef228c1962022-12-21T20:48:18ZengBMCBMC Medical Research Methodology1471-22882021-01-0121111410.1186/s12874-020-01206-5Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchersSandra C. S. Marques0Julia Doetsch1Georgia Abate2Anne Brødsgaard3Grazia Colombo4Marina Cuttini5Pernille Pedersen6Henrique Barros7on behalf of RECAP Preterm-WP6 QS Work GroupEPIUnit, Instituto de Saúde Pública da Universidade do PortoEPIUnit, Instituto de Saúde Pública da Universidade do PortoClinical Care and Management Innovation Research Area, Bambino Gesù Children’s Hospital, IRCCSDepartment of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager HvidovreClinical Care and Management Innovation Research Area, Bambino Gesù Children’s Hospital, IRCCSClinical Care and Management Innovation Research Area, Bambino Gesù Children’s Hospital, IRCCSDepartment of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager HvidovreEPIUnit, Instituto de Saúde Pública da Universidade do PortoAbstract 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.https://doi.org/10.1186/s12874-020-01206-5European cohortsLongitudinalPreterm childrenParticipationRetentionMulti-situated qualitative study |
| spellingShingle | Sandra C. S. Marques Julia Doetsch Georgia Abate Anne Brødsgaard Grazia Colombo Marina Cuttini Pernille Pedersen Henrique Barros on behalf of RECAP Preterm-WP6 QS Work Group Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchers BMC Medical Research Methodology European cohorts Longitudinal Preterm children Participation Retention Multi-situated qualitative study |
| title | Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchers |
| title_full | Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchers |
| title_fullStr | Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchers |
| title_full_unstemmed | Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchers |
| title_short | Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchers |
| title_sort | understanding participation in european cohort studies of preterm children the views of parents healthcare professionals and researchers |
| topic | European cohorts Longitudinal Preterm children Participation Retention Multi-situated qualitative study |
| url | https://doi.org/10.1186/s12874-020-01206-5 |
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