title: Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Paediatrics and Child Health, Red Cross War Memorial Children's Hospital, and Medical Research Council Unit on Child & Adolescent Health, University of Cape Town, Cape Town, South Africa. barnett.whitney@gmail.com.
authors.forename: Whitney
authors.initials: W
authors.lastname: Barnett
authors.affiliation: Department of Paediatrics and Child Health, Red Cross War Memorial Children's Hospital, and Medical Research Council Unit on Child & Adolescent Health, University of Cape Town, Cape Town, South Africa.
authors.forename: Kirsty
authors.initials: K
authors.lastname: Brittain
authors.affiliation: Alan J. Flisher Centre for Public Mental Health, Department of Psychiatry, University of Cape Town, Cape Town, South Africa.
authors.forename: Katherine
authors.initials: K
authors.lastname: Sorsdahl
authors.affiliation: Department of Paediatrics and Child Health, Red Cross War Memorial Children's Hospital, and Medical Research Council Unit on Child & Adolescent Health, University of Cape Town, Cape Town, South Africa.
authors.forename: Heather J
authors.initials: HJ
authors.lastname: Zar
authors.affiliation: Department of Psychiatry and Mental Health, University of Cape Town, Cape Town, South Africa.|Medical Research Council Unit on Anxiety & Stress Disorders, Cape Town, South Africa.
authors.forename: Dan J
authors.initials: DJ
authors.lastname: Stein
mesh_terms: D000328:Adult; D035843:Biomedical Research; D015331:Cohort Studies; D005260:Female; D006801:Humans; D007223:Infant; D011247:Pregnancy; D037841:Pregnant People; D012106:Research; D013019:South Africa; D011795:Surveys and Questionnaires; D014838:Volunteers
keywords: Healthy volunteer; Participant experience; Research burden; Respondent satisfaction