Improving Understanding of Participation and Attrition Phenomena in European Cohort Studies

Improving Understanding of Participation and Attrition Phenomena in European Cohort Studies: Protocol for a Multi-situated Qualitative Study

Marques, S.C.S.
Doetsch, J.
Brødsgaard, A.
Cuttini, M.
Draper, E.S.
Kajantie, E.
Lebeer, J.
van der Pal, S.
Pedersen, P.
Barros, H.

2020

Background: Cohort studies represent a strong methodology for increasing understanding of human life-course development and aetiological mechanisms. Retention of participants, especially during long follow-up periods, is, however, a major challenge. A better understanding of motives for participation and for participants’ reluctance to continue in cohort studies in diverse socio-geographic and cultural settings is needed as this information is most useful in developing effective retention strategies. Objective: We present a study design aiming to improve understanding of participation and attrition phenomena in European cohort of very preterm and/or very low birth weight (VPT/VLBW) studies in various socio-geographic and cultural settings in order to understand variability and to ultimately contribute to develop novel and/or more ‘in context’ strategies to improve retention. Methods: This study uses a triangulation of multi-situated methods to collect data on RECAP Preterm’s cohorts, which include: focus groups and individual semi-driven interviewing with adult participants, parents (caregivers), cohort staff, health-care professionals as well as other relevant key actors and a collaborative reflexive visual methodology (participant-generated VideoStories) with parents and adults participating in the cohorts. The methodological strategy aims to provide a shared flexible framework of various qualitatively-driven methods to collect data on cohorts of VPT/VLBW adults and children, from which local research partners may choose and combine those most adequate to apply in their own specific contexts. Data from all sources and sites will be submitted to a triangulation of phenomenological thematic analysis with discourse analysis. Results: This paper focuses only on the research approach used in the study. Findings will be reported in detail in future publications. At the time of publication, the process of data collection is underway. Conclusions: Qualitative research methods are a useful complement for enriching and illuminating quantitative results. Some of the distinctive features of our study approach are the use of open, exploratory research questions and the employment of meaning-based forms of data analysis, which tend to potentiate the emergence of something new. We expect that opting for a multi-situated flexible approach to garner feedback from the various key actors involved with cohorts in different settings will contribute towards filling some gaps in the understanding of participation and attrition phenomena. Moreover, health research subjects have traditionally been positioned as passive objects of study rather than active participants, even though they have the greatest stake in improving health-care and practices. The use of collaborative methods allows to counteract the ‘top down’ model by handing some research control to the very people who are providing the data on which research findings will be based, while also acknowledging the value of their involvement. Findings of this study will be of great value to foster retention of participants in longitudinal cohort studies.

http://resolver.tudelft.nl/uuid:6b15e95e-579f-409c-92fb-3d8f868e7a8c

https://doi.org/10.2196/14997

877602

JMIR Researh Protocol, 9 (9), e14997

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