BACKGROUND Critical to conducting high quality research is the ability to attract and retain participants, especially for longitudinal studies. Understanding participant experiences and motivators or barriers to participating in clinical research is crucial. There are limited data on healthy participant experiences in longitudinal research, particularly in low- and middle-income countries. This study aims to investigate quantitatively participant experiences in a South African birth cohort study. METHODS Maternal participant experience was evaluated by a self-administered survey in the Drakenstein Child Health Study, a longitudinal birth cohort study investigating the early life determinants of child health. Pregnant mothers, enrolled during the second trimester, were followed through childbirth and the early childhood years. Satisfaction scores were derived from the participant experience survey and quantitatively analyzed; associations between satisfaction scores and sociodemographic variables were then investigated using a linear regression model. RESULTS Data were included from 585 pregnant mothers (median age 26.6 years), who had participated in the study for a median time of 16 months. Overall participant satisfaction was high (median score 51/60) and associated with increased attendance of study visits. Reasons for participating were a belief that involvement would improve their health, their child's health or the health of family and friends. Potential reasons for leaving the study were inconvenience, not receiving clinical or study results, and unexpected changes in study visits or procedures. Variables associated with higher overall satisfaction scores were no prior participation in research, higher socioeconomic status, less intensive follow-up schedules and having experienced stressful life events in the past year. CONCLUSIONS Satisfaction scores were high and associated with increased visit attendance. Participants' perceived benefits of study participation, most notably the potential for an improvement in the health of their child, were a significant motivator to enroll and remain in the study. The consistent theme of perceived health benefits as a motivator to join and remain in the study raises the question of whether participation in research results in actual improvements in health.

中文翻译：

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南非出生队列研究的母亲参与者经验，该研究招募了健康的孕妇及其婴儿。

背景技术进行高质量研究的关键是吸引和保留参与者的能力，特别是对于纵向研究而言。了解参与者的经验和动机或参与临床研究的障碍至关重要。在纵向研究中，特别是在中低收入国家，有关健康参与者经验的数据有限。这项研究旨在定量研究南非出生队列研究中的参与者经验。方法通过对德拉肯斯坦儿童健康研究（一项纵向出生队列研究，调查儿童健康早期决定因素）进行的自我管理调查，评估了孕产妇参加者的经历。在妊娠中期登记的怀孕母亲，随后进行了分娩和儿童早期时期的研究。满意度分数来自参与者的经验调查，并进行了定量分析；然后使用线性回归模型研究满意度得分与社会人口统计学变量之间的关联。结果数据来自585名怀孕母亲（中位年龄26.6岁），他们参加了这项研究的中位时间为16个月。总体参与者满意度很高（中位数得分为51/60），并且与参加研究访问的人数增加有关。参加的理由是，相信参与会改善他们的健康，孩子的健康或家人和朋友的健康。退出研究的潜在原因是不便，未收到临床或研究结果，以及研究访视或程序的意料之外的变化。与总体满意度较高相关的变量是，以前没有参与过研究，社会经济地位较高，随访计划强度不高以及在过去的一年中经历过压力大的生活事件。结论满意度得分很高，并且与出勤率增加有关。参与者对研究参与的感知收益，尤其是改善孩子健康的潜力，是促使他们加入并留在研究中的重要动机。人们一直认为健康有益于参与和留在研究中的动机这一始终如一的主题提出了一个问题，即参与研究是否会带来实际的健康改善。较不密集的随访计划，并且在过去的一年中经历过压力大的生活事件。结论满意度得分很高，并且与出勤率增加有关。参与者对研究参与的感知收益，尤其是改善孩子健康的潜力，是促使他们加入并留在研究中的重要动机。人们一直认为健康有益于参与和留在研究中的动机这一始终如一的主题提出了一个问题，即参与研究是否会带来实际的健康改善。较不密集的随访计划，并且在过去的一年中经历过压力大的生活事件。结论满意度得分很高，并且与出勤率增加有关。参与者对研究参与的感知收益，尤其是改善孩子健康的潜力，是促使他们加入并留在研究中的重要动机。人们一直认为健康有益于参与和留在研究中的动机这一始终如一的主题提出了一个问题，即参与研究是否会带来实际的健康改善。是加入并留在研究中的重要动机。人们一直认为健康有益于参与和留在研究中的动机这一始终如一的主题提出了一个问题，即参与研究是否会带来实际的健康改善。是加入并留在研究中的重要动机。人们一直认为健康有益于参与和留在研究中的动机这一始终如一的主题提出了一个问题，即参与研究是否会带来实际的健康改善。