Increased interaction and procedural flexibility favoured participation: Study across European cohorts of preterm born individuals

Autor: Sandra CS. Marques, Julia Nadine Doetsch, Raquel Teixeira, Georgia Abate, Anne Brødsgaard, Ann-Mari Brubakk, Grazia Colombo, Marina Cuttini, Kari Anne I. Evensen, Vicky Hennissen, Marit S. Indredavik, Eero Kajantie, Jo Lebeer, Sylvia van der Pal, Pernille Pedersen, Iemke Sarrechia, Eeva Virtanen, Henrique Barros
Přispěvatelé: Instituto de Saúde Pública da Universidade do Porto
Jazyk: angličtina
Rok vydání: 2022
Předmět:
Zdroj: Journal of Clinical Epidemiology
Marques, S C, Doetsch, J N, Teixeira, R, Abate, G, Brødsgaard, A, Brubakk, A-M, Colombo, G, Cuttini, M, Evensen, K A I, Hennissen, V, Indredavik, M S, Kajantie, E, Lebeer, J, van der Pal, S, Pedersen, P, Sarrechia, I, Virtanen, E, Barros, H & RECAP Preterm-WP6 QS Work Group 2022, ' Increased interaction and procedural flexibility favoured participation : Study across European cohorts of preterm born individuals ', Journal of Clinical Epidemiology, vol. 143, pp. 169-177 . https://doi.org/10.1016/j.jclinepi.2021.12.027
Journal of clinical epidemiology
ISSN: 0895-4356
Popis: Objective: To understand participation and attrition phenomena variability in European cohorts of individuals born preterm through in-depth exploration of the interplay of situational elements involved. Methods: Multi-situated qualitative design, using focus groups, semi-structured interviews and collaborative visual methodology with a purposive sample of adults born preterm, parents and professionals (n = 124) from eight cohorts in seven European countries. Results: Most cohort participants were motivated by altruism/solidarity and gratitude/sense of duty to reciprocate (only absent in adults aged 19 – 21), followed by expectation of direct benefit to one's health and knowledge amongst participating adults. Common deterrents were perceived failure in reciprocity as in insufficient/inadequate interaction and information sharing, and postal questionnaires. Combining multipurpose, flexible strategies for contact and assessment, reminders, face-to-face and shorter periodicity and not simply adding retention strategies or financial incentives favoured participation. Professionals’ main challenges entailed resources, funding and, European societal changes related to communication and geopolitical environment. Conclusion: Retention would benefit from tailoring inclusive strategies throughout the cohorts’ life cycle and consistent promotion of reciprocal altruistic research goals. Investing in regular interaction, flexibility in procedures, participant involvement and return of results can help mitigate attrition as well as considering mothers as main facilitators to participating children and impaired adults. This study is part of the RECAP preterm project funded by the European Union's Horizon 2020 research and innovation programme under grant agreement No 733280. This study is funded by FEDER funds through the Operational Program for Competitiveness and Internationalization, and by national funds of FCT – Fundação para a Ciência e Tecnologia, the Unidade de Investigação em Epidemiologia (EPIUnit) - Instituto de Saúde Pública da Universidade do Porto (ISPUP) (info:eu-repo/grantAgreement/FCT/6817 - DCRRNI ID/UIDB/04750/2020/PT).
Databáze: OpenAIRE
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