Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants

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dc.contributor.authorBarnett, Whitney
dc.contributor.authorBrittain, Kirsty
dc.contributor.authorSorsdahl, Katherine
dc.contributor.authorZar, Heather J
dc.contributor.authorStein, Dan J
dc.date.accessioned2021-10-08T07:11:27Z
dc.date.available2021-10-08T07:11:27Z
dc.date.issued2016
dc.description.abstractAbstract 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.
dc.identifier.apacitationBarnett, W., Brittain, K., Sorsdahl, K., Zar, H. J., & Stein, D. J. (2016). Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants. <i>Philosophy, Ethics, and Humanities in Medicine</i>, 11(1), 174 - 177. http://hdl.handle.net/11427/34614en_ZA
dc.identifier.chicagocitationBarnett, Whitney, Kirsty Brittain, Katherine Sorsdahl, Heather J Zar, and Dan J Stein "Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants." <i>Philosophy, Ethics, and Humanities in Medicine</i> 11, 1. (2016): 174 - 177. http://hdl.handle.net/11427/34614en_ZA
dc.identifier.citationBarnett, W., Brittain, K., Sorsdahl, K., Zar, H.J. & Stein, D.J. 2016. Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants. <i>Philosophy, Ethics, and Humanities in Medicine.</i> 11(1):174 - 177. http://hdl.handle.net/11427/34614en_ZA
dc.identifier.issn1747-5341
dc.identifier.ris TY - Journal Article AU - Barnett, Whitney AU - Brittain, Kirsty AU - Sorsdahl, Katherine AU - Zar, Heather J AU - Stein, Dan J AB - Abstract 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. DA - 2016 DB - OpenUCT DP - University of Cape Town IS - 1 J1 - Philosophy, Ethics, and Humanities in Medicine LK - https://open.uct.ac.za PY - 2016 SM - 1747-5341 T1 - Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants TI - Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants UR - http://hdl.handle.net/11427/34614 ER - en_ZA
dc.identifier.urihttp://hdl.handle.net/11427/34614
dc.identifier.vancouvercitationBarnett W, Brittain K, Sorsdahl K, Zar HJ, Stein DJ. Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants. Philosophy, Ethics, and Humanities in Medicine. 2016;11(1):174 - 177. http://hdl.handle.net/11427/34614.en_ZA
dc.language.isoeng
dc.publisher.departmentDepartment of Public Health and Family Medicine
dc.publisher.facultyFaculty of Health Sciences
dc.sourcePhilosophy, Ethics, and Humanities in Medicine
dc.source.journalissue1
dc.source.journalvolume11
dc.source.pagination174 - 177
dc.source.urihttps://dx.doi.org/10.1186/s13010-016-0036-2
dc.subject.otherHealthy volunteer
dc.subject.otherParticipant experience
dc.subject.otherResearch burden
dc.subject.otherRespondent satisfaction
dc.subject.otherAdult
dc.subject.otherBiomedical Research
dc.subject.otherCohort Studies
dc.subject.otherFemale
dc.subject.otherHumans
dc.subject.otherInfant
dc.subject.otherPregnancy
dc.subject.otherPregnant Women
dc.subject.otherResearch
dc.subject.otherSouth Africa
dc.subject.otherSurveys and Questionnaires
dc.subject.otherVolunteers
dc.titleMaternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants
dc.typeJournal Article
uct.type.publicationResearch
uct.type.resourceJournal Article
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