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


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          Cohort studies represent a strong methodology for increasing one’s understanding of human life-course development and etiological mechanisms. Retention of participants, especially during long follow-up periods, is, however, a major challenge. A better understanding of the motives for participation and attrition in cohort studies in diverse sociogeographic and cultural settings is needed, as this information is most useful in developing effective retention strategies.


          This study aims to improve our understanding of participation and attrition phenomena in a European cohort study of very preterm/very-low-birth-weight (VPT/VLBW) infants from various sociogeographic and cultural settings to better understand variability and ultimately contribute to developing novel and more “in-context” strategies to improve retention.


          This study uses a triangulation of multisituated methods to collect data on various cohorts in the Research on European Children and Adults Born Preterm (RECAP) network, which include focus group discussions, individual semidriven interviews, and a collaborative, reflexive visual methodology (participant-generated VideoStories) with relevant key actors involved with these cohort studies such as adult participants, parents (caregivers), cohort staff, health care professionals, and academic researchers. The methodological strategy aims to provide a shared flexible framework of various qualitatively driven methods to collect data on VPT/VLBW adult and child cohorts, from which research partners may choose and combine those most pertinent 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.


          As of January 2020, in this study, we enrolled 92 participants variously involved with child and adult RECAP partnering cohorts from six countries. Multisite enrollment and data collection are expected to be completed in all seven study settings by June 2020. Findings will be reported in future publications.


          Qualitative research methods are a useful complement for enriching and illuminating quantitative results. We expect that opting for a multisituated study approach addressing the interplay of the lived experience of individuals in both researcher and researched stances of particular cohort study settings will contribute to filling some gaps in the understanding of participation variability and effectiveness of different implemented strategies in context. 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 policies and practices. Including collaborative methods allows us to counteract the “top-down” model by handing over 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.

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          Most cited references39

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          Photovoice: a review of the literature in health and public health.

          Although a growing number of projects have been implemented using the community-based participatory research method known as photovoice, no known systematic review of the literature on this approach has been conducted to date. This review draws on the peer-reviewed literature on photovoice in public health and related disciplines conducted before January 2008 to determine (a) what defines the photovoice process, (b) the outcomes associated with photovoice, and (c) how the level of community participation is related to photovoice processes and outcomes. In all, 37 unduplicated articles were identified and reviewed using a descriptive coding scheme and Viswanathan et al.'s quality of participation tool. Findings reveal no relationship between group size and quality of participation but a direct relationship between the latter and project duration as well as with getting to action. More participatory projects also were associated with long-standing relationships between the community and outside researcher partners and an intensive training component. Although vague descriptions of project evaluation practices and a lack of consistent reporting precluded hard conclusions, 60% of projects reported an action component. Particularly among highly participatory projects, photovoice appears to contribute to an enhanced understanding of community assets and needs and to empowerment.
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            Loss to follow-up in cohort studies: how much is too much?

            Loss to follow-up is problematic in most cohort studies and often leads to bias. Although guidelines suggest acceptable follow-up rates, the authors are unaware of studies that test the validity of these recommendations. The objective of this study was to determine whether the recommended follow-up thresholds of 60-80% are associated with biased effects in cohort studies. A simulation study was conducted using 1000 computer replications of a cohort of 500 observations. The logistic regression model included a binary exposure and three confounders. Varied correlation structures of the data represented various levels of confounding. Differing levels of loss to follow-up were generated through three mechanisms: missing completely at random (MCAR), missing at random (MAR) and missing not at random (MNAR). The authors found no important bias with levels of loss that varied from 5 to 60% when loss to follow-up was related to MCAR or MAR mechanisms. However, when observations were lost to follow-up based on a MNAR mechanism, the authors found seriously biased estimates of the odds ratios with low levels of loss to follow-up. Loss to follow-up in cohort studies rarely occurs randomly. Therefore, when planning a cohort study, one should assume that loss to follow-up is MNAR and attempt to achieve the maximum follow-up rate possible.
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              Empowerment through Photo Novella: Portraits of Participation


                Author and article information

                JMIR Res Protoc
                JMIR Res Protoc
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                July 2020
                15 July 2020
                : 9
                : 7
                : e14997
                [1 ] EPIUnit Instituto de Saúde Pública da Universidade do Porto Universidade do Porto Porto Portugal
                [2 ] Centro em Rede de Investigação em Antropologia Instituto Universitário de Lisboa Lisbon Portugal
                [3 ] School of Public Health and Primary Care Faculty of Health, Medicine and Life Sciences Maastricht University Maastricht Netherlands
                [4 ] Department of Paediatrics and Adolescent Medicine Copenhagen University Hospital Amager Hvidovre Copenhagen Denmark
                [5 ] Research Unit of Perinatal Epidemiology, Clinical Care and Management Innovation Research Area Ospedale Pediatrico Bambino Gesù Institute for Research Hospitalization and Health Care Rome Italy
                [6 ] Department of Health Sciences College of Life Sciences University of Leicester Leicester United Kingdom
                [7 ] Public Health Promotion Unit National Institute for Health and Welfare Helsinki Finland
                [8 ] PEDEGO Research Unit MRC Oulu University of Oulu and Oulu University Hospital Oulu Finland
                [9 ] Department of Clinical and Molecular Medicine Norwegian University for Science and Technology Trondheim Norway
                [10 ] Children’s Hospital Helsinki University Hospital Helsinki Finland
                [11 ] Department ELIZA Primary & Interdisciplinary Care Faculty of Medicine & Health Sciences University of Antwerp Antwerp Belgium
                [12 ] TNO Child Health Leiden Netherlands
                [13 ] see Acknowledgments
                [14 ] Departamento de Ciências da Saúde Pública e Forenses e Educação Médica Faculdade de Medicina Universidade do Porto Porto Portugal
                Author notes
                Corresponding Author: Sandra C S Marques sandra.marques@ 123456ispup.up.pt
                Author information
                ©Sandra C S Marques, Julia Doetsch, Anne Brødsgaard, Marina Cuttini, Elizabeth S Draper, Eero Kajantie, Jo Lebeer, Sylvia van der Pal, Pernille Pedersen, RECAP - WP6 QS Work Group, Henrique Barros. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 15.07.2020.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.

                : 11 June 2019
                : 12 February 2020
                : 17 February 2020
                : 23 March 2020

                european cohorts,vpt,vlbw,preterm,participation,attrition,multi-situated qualitative study,collaborative visual methods,triangulation


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