EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Rua das Taipas 135, 4050-091, Porto, Portugal.
Centro em Rede de Investigação em Antropologia, Instituto Universitário de Lisboa, Lisboa, Portugal.
BMC Med Res Methodol. 2021 Jan 12;21(1):19. doi: 10.1186/s12874-020-01206-5.
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.
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.
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.
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.
在队列研究中，参与者的保留是一个主要挑战。需要更好地了解特定环境中参与和流失现象所涉及的所有因素，以便制定有效的保留策略。本研究旨在从参与者和研究人员的角度深入了解纵向队列中参与者的保留情况，跨越三个不同的社会地理和文化背景。
本研究采用多情境方法的三角测量，收集丹麦、意大利和葡萄牙出生时胎龄不足 32 周的儿童队列研究的数据。它包括与相关主要参与者（即父母、工作人员、医疗保健专业人员、研究人员）进行焦点小组和个人半驱动访谈，以及合作视觉方法。收集了 48 名主要参与者（丹麦 13 名；意大利 13 名；葡萄牙 22 名）的有目的样本。应用了现象学主题分析与话语分析的三角测量。在不同层面和阶段确定了参与和流失现象涉及的跨情境和情境特定情境因素。
主要发现包括：影响实施策略的潜在和可能性范围的情境挑战（地缘政治环境、社会变化、研究资助模式）；与作为障碍的特定策略相关的情境因素（邮寄问卷）和促进因素（多种灵活策略、提醒、定期互动）；参与和参与后续波的主要动机（利他主义/团结和感激/回报的责任感）；参与后续波的主要动机障碍（缺乏联系、反馈不足）；临床和研究随访的纠缠是促进和障碍。
使用的多情境方法解决了个人生活经历的相互作用，对于理解不同实施策略下的参与变异性最有价值。确定了对队列中参与和流失有影响的跨情境和情境特定情境因素。
