What does engagement mean to participants in longitudinal cohort studies? A qualitative study

Abstract Background Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies their involved in may promote their recruitment and retention within the studies. It is also thought that participant input can improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study. Methods Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. Results Participants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. Conclusions The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt -in receiving gifts from CO90s and other times more nuanced- for example through CO90s ethical conduct. This perceived reciprocity aligns well with Maussian conception of gifting and in this case espoused participants’ trust in the cohort resulting in a unique participant-cohort study relationship.

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What does engagement mean to participants in longitudinal cohort studies? A qualitative study

BMC Medical Ethics ◽

10.1186/s12910-021-00648-w ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Cynthia A. Ochieng ◽

Joel T. Minion ◽

Andrew Turner ◽

Mwenza Blell ◽

Madeleine J. Murtagh

Keyword(s):

Cohort Study ◽

Cohort Studies ◽

Ethical Conduct ◽

Birth Cohort Study ◽

Clinical Tests ◽

Structured Interviews ◽

Future Studies ◽

Greeting Cards ◽

Study Designs ◽

Comparison Technique

Abstract Background Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study. Methods Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. Results Participants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. Conclusion The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies.

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Study Design in Neurosurgical Research: Considerations for Observational and Experimental Cohort Studies

Neurosurgery ◽

10.1093/neuros/nyz386 ◽

2019 ◽

Vol 86 (1) ◽

pp. 14-18

Author(s):

Christopher E Louie ◽

Erin D’Agostino ◽

Alexander Woods ◽

Timothy Ryken

Keyword(s):

Cohort Study ◽

Clinical Study ◽

Cohort Studies ◽

Study Design ◽

Chronic Subdural Hematoma ◽

Neurosurgical Procedures ◽

Fundamental Study ◽

Observational Cohort ◽

Research Questions ◽

Study Designs

Abstract There is inadequate neurosurgical literature discussing appropriate clinical study design. Here, we explore considerations for 2 fundamental study designs of epidemiology: experimental and observational cohort studies, through examples of theoretical yet realistic neurosurgical research questions. By examining 2 common neurosurgical procedures—namely, subdural drains for evacuation of chronic subdural hematoma, and the utility of navigation for placing external ventricular drains—we characterize the framework of cohort study models for clinical research applications.

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Moderators of the Relationship Between Physical Activity Enjoyment and Physical Activity in Children

Journal of Physical Activity and Health ◽

10.1123/jpah.2014-0011 ◽

2015 ◽

Vol 12 (8) ◽

pp. 1066-1073 ◽

Cited By ~ 5

Author(s):

Teun Remmers ◽

Ester F.C. Sleddens ◽

Stef P.J. Kremers ◽

Carel Thijs

Keyword(s):

Physical Activity ◽

Cohort Study ◽

Important Determinant ◽

Birth Cohort Study ◽

Future Studies ◽

Interaction Terms ◽

The Relationship ◽

Linear Regressions ◽

Activity Enjoyment

Background:Physical activity (PA) enjoyment may be an important determinant of long-term habitual, self-sustained PA behavior in children. The objective of the current study was to contribute toward a better understanding of how children’s PA enjoyment is associated with PA behavior by examining the influence of age, gender, BMI, and impulsivity as theoretically hypothesized moderators of this relationship.Methods:PA was measured in 171 children (77 boys, 91 girls) using accelerometers, and PA enjoyment was assessed with the validated Physical Activity Enjoyment Scale in 9-year-old children from the KOALA Birth Cohort Study, the Netherlands. Linear regressions were fitted. Moderation was tested by adding interaction terms between PA enjoyment and the potential moderators.Results:We found a significant 3-way interaction (PA enjoyment × gender × impulsivity) for all intensities of PA behavior. In boys, impulsivity strengthened the relationship between PA enjoyment and PA behavior, whereas in girls impulsivity weakened this relationship.Conclusion:In girls, this may be explained by the relative automatic occurrence of PA behavior in impulsive girls (independent of PA enjoyment). In boys, the possibility that impulsivity is associated with hyperactivity may explain this moderation. The current study may encourage researchers to investigate these interactions in future studies.

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A review of mother-child and birth cohort studies in the Middle East Area

Journal of Epidemiological Research ◽

10.5430/jer.v6n1p22 ◽

2021 ◽

Vol 6 (1) ◽

pp. 22

Author(s):

Eleni Fthenou ◽

Samah Aboulsoud ◽

Vasiliki Leventakou ◽

Alexandra Haddad ◽

Manolis Kogevinas ◽

...

Keyword(s):

Middle East ◽

Cohort Studies ◽

Birth Cohort ◽

United Arab Emirates ◽

Early Life ◽

Environmental Data ◽

Personal Contact ◽

Future Studies ◽

Study Designs ◽

Early Life Exposures

Mother-Child and Birth cohort studies offer an excellent opportunity to evaluate the effects of ’early life’ exposures providing an insight in the etiology of chronic diseases. To our knowledge, this is the first study that aims to provide a comprehensive review of these studies in the Middle East Area (MEA). Authors searched to relevant registries, the Pubmed interface, internet search tools and had personal contact with study PIs. The search revealed 117 mother-child and birth cohort studies from 9 MEA region countries (Iran, Israel, Jordan, Kuwait, Lebanon, Palestine, Saudi Arabia, United Arab Emirates and Qatar). Variability in the identified studies refers to the study design, objectives and the years of recruitment. Biological samples and data on environmental exposures were absent with the exception of limited studies (n = 44). This review revealed a sufficient number of available cohorts, however few have followed up children beyond the age of 2 years. Improved study designs focused on molecular and environmental data acquisition are required in a region that shares a set of unique characteristics in terms of landscape, climate, culture, and lifestyle. This review provides valuable information for planning future studies and set the grounds for collaborationswithin the MEA region and internationally.

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The Pelotas birth cohort study, Rio Grande do Sul, Brazil, 1982-2001

Cadernos de Saúde Pública ◽

10.1590/s0102-311x2003000500003 ◽

2003 ◽

Vol 19 (5) ◽

pp. 1241-1256 ◽

Cited By ~ 81

Author(s):

Cesar G. Victora ◽

Fernando C. Barros ◽

Rosângela C. Lima ◽

Dominique P. Behague ◽

Helen Gonçalves ◽

...

Keyword(s):

Cohort Study ◽

Cohort Studies ◽

Birth Cohort ◽

Lessons Learned ◽

Birth Cohort Study ◽

Health Studies ◽

Hospital Births ◽

The Life Course

Given the growing recognition of the importance of the life course approach for the determination of chronic diseases, birth cohort studies are becoming increasingly important. This paper describes the methods used in the 1982 Pelotas (Brazil) birth cohort study, one of the largest and longest studies of this type in developing countries. All 5,914 hospital births occurring in Pelotas in 1982 (over 99% of all deliveries) were studied prospectively. The main stages of the study took place in 1983, 1984, 1986, 1995, 1997, 2000, and 2001. More than two thousand variables are available for each subject who participated in all stages of the study. Recent phases of the study included the examination of 2,250 males when presenting for the army recruitment exam in 2000, the study of a 27% sample of men and women in 2001 through household visits, and the study of over 400 children born to the cohort women. Follow-up rates in the recent stages of the cohort were 78.9% for the army examination and 69.0% for the household visits. Ethnographic and oral health studies were conducted in sub-samples. Some recent results on blood pressure, adolescent pregnancy, and asthma are presented as examples of utilization of the data. Suggestions on lessons learned for other cohort studies are proposed.

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