Marques Sandra Cs, Doetsch Julia Nadine, Teixeira Raquel, Abate Georgia, Brødsgaard Anne, Brubakk Ann-Mari, Colombo Grazia, Cuttini Marina, Evensen Kari Anne I, Hennissen Vicky, Indredavik Marit S, Kajantie Eero, Lebeer Jo, van der Pal Sylvia, Pedersen Pernille, Sarrechia Iemke, Virtanen Eeva, Barros Henrique
EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Rua das Taipas 135, Porto, 4050-091 , Portugal; Centro em Rede de Investigação em Antropologia (CRIA), Instituto Universitário de Lisboa, Lisbon, Portugal; Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Porto, Portugal.
EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Rua das Taipas 135, Porto, 4050-091 , Portugal; Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR), Porto, Portugal.
J Clin Epidemiol. 2022 Mar;143:169-177. doi: 10.1016/j.jclinepi.2021.12.027. Epub 2021 Dec 26.
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.
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.
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.
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.
通过深入探究相关情境因素之间的相互作用，了解欧洲早产出生个体队列中的参与和损耗现象的变异性。
采用多情境定性设计，对来自欧洲七个国家八个队列的早产出生的成年人、父母和专业人员（n = 124）进行目的抽样，运用焦点小组、半结构化访谈和协作视觉方法。
大多数队列参与者的动机是利他主义/团结以及感恩/回报的责任感（仅在19 - 21岁的成年人中不存在），其次是参与的成年人期望对自身健康和知识有直接益处。常见的阻碍因素包括认为在互惠方面失败，如互动和信息共享不足/不充分，以及邮寄问卷。结合多用途、灵活的联系和评估策略、提醒、面对面交流以及较短的周期，而不是简单地增加保留策略或经济激励措施，更有利于参与。专业人员面临的主要挑战包括资源、资金，以及与沟通和地缘政治环境相关的欧洲社会变化。
在整个队列的生命周期中制定包容性策略并持续推广互惠利他主义的研究目标，将有利于留住参与者。投入定期互动、程序灵活性、参与者参与以及结果反馈，有助于减少损耗，同时将母亲视为参与儿童和残疾成年人的主要促进者。
