Utilize este identificador para referenciar este registo:
http://hdl.handle.net/10071/24093
Autoria: | Marques, S. C. S. Doetsch, J. N. Abate, G. Brødsgaard, A. Colombo, G. Cuttini, M. Pedersen, P. Barros, H. |
Data: | 2021 |
Título próprio: | Understanding participation in European cohort studies of preterm children: The views of parents, healthcare professionals and researchers |
Volume: | 21 |
Número: | 1 |
ISSN: | 1471-2288 |
DOI (Digital Object Identifier): | 10.1186/s12874-020-01206-5 |
Palavras-chave: | European cohorts Longitudinal Preterm children Participation Retention Multi-situated qualitative study Collaborative visual methods |
Resumo: | 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. |
Arbitragem científica: | yes |
Acesso: | Acesso Aberto |
Aparece nas coleções: | CRIA-RI - Artigos em revistas científicas internacionais com arbitragem científica |
Ficheiros deste registo:
Ficheiro | Descrição | Tamanho | Formato | |
---|---|---|---|---|
article_85382.pdf | Versão Editora | 606,32 kB | Adobe PDF | Ver/Abrir |
Todos os registos no repositório estão protegidos por leis de copyright, com todos os direitos reservados.