Sandra C S Marques1,2, Julia Doetsch1, Georgia Abate3, Anne Brødsgaard4,5, Grazia Colombo3, Marina Cuttini3, Pernille Pedersen4, Henrique Barros6. 1. EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Rua das Taipas 135, 4050-091, Porto, Portugal. 2. Centro em Rede de Investigação em Antropologia, Instituto Universitário de Lisboa, Lisboa, Portugal. 3. Clinical Care and Management Innovation Research Area, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy. 4. Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager Hvidovre, Hvidovre, Denmark. 5. Department of Public Health, HEALTH, Aarhus University, Aarhus, Denmark. 6. EPIUnit, Instituto de Saúde Pública da Universidade do Porto, Rua das Taipas 135, 4050-091, Porto, Portugal. hbarros@med.up.pt.
Abstract
BACKGROUND: Retention of participants in cohort studies is a major challenge. A better understanding of all elements involved in participation and attrition phenomena in particular settings is needed to develop effective retention strategies. The study aimed to achieve an in-depth understanding of participant retention in longitudinal cohorts focusing on participants' and researcher's perspectives, across three diverse socio-geographic and cultural settings. METHODS: This study used a triangulation of multi-situated methods to collect data on cohort studies of children born with less than 32 weeks of gestation in Denmark, Italy and Portugal. It included focus groups and individual semi-driven interviewing with involved key actors (i.e. parents, staff, healthcare professionals, researchers) and a collaborative visual methodology. A purposive sample of 48 key actors (n = 13 in Denmark; n = 13 in Italy; n = 22 in Portugal) was collected. A triangulation of phenomenological thematic analysis with discourse analysis was applied. Cross-contextual and context-specific situational elements involved in participation and attrition phenomena in these child cohorts were identified at various levels and stages. RESULTS: Main findings included: situational challenges affecting potential and range of possibilities for implementation strategies (geopolitical environment, societal changes, research funding models); situational elements related to particular strategies acting as deterrents (postal questionnaires) and facilitators (multiple flexible strategies, reminders, regular interaction); main motivations to enrol and participate (altruism/solidarity and gratitude/sense of duty to reciprocate); main motivational deterrents to participate to follow-up waves (lack of bonding, insufficient feedback); entanglement of clinical and research follow-up as facilitator and deterrent. CONCLUSIONS: The multi-situated approach used, addressing the interplay of the lived experience of individuals, was of most value to understand participation variability under different implemented strategies in-context. Cross-contextual and context-specific situational elements that have been influential factors towards participation and attrition in the cohorts were identified.
BACKGROUND: Retention of participants in cohort studies is a major challenge. A better understanding of all elements involved in participation and attrition phenomena in particular settings is needed to develop effective retention strategies. The study aimed to achieve an in-depth understanding of participant retention in longitudinal cohorts focusing on participants' and researcher's perspectives, across three diverse socio-geographic and cultural settings. METHODS: This study used a triangulation of multi-situated methods to collect data on cohort studies of children born with less than 32 weeks of gestation in Denmark, Italy and Portugal. It included focus groups and individual semi-driven interviewing with involved key actors (i.e. parents, staff, healthcare professionals, researchers) and a collaborative visual methodology. A purposive sample of 48 key actors (n = 13 in Denmark; n = 13 in Italy; n = 22 in Portugal) was collected. A triangulation of phenomenological thematic analysis with discourse analysis was applied. Cross-contextual and context-specific situational elements involved in participation and attrition phenomena in these child cohorts were identified at various levels and stages. RESULTS: Main findings included: situational challenges affecting potential and range of possibilities for implementation strategies (geopolitical environment, societal changes, research funding models); situational elements related to particular strategies acting as deterrents (postal questionnaires) and facilitators (multiple flexible strategies, reminders, regular interaction); main motivations to enrol and participate (altruism/solidarity and gratitude/sense of duty to reciprocate); main motivational deterrents to participate to follow-up waves (lack of bonding, insufficient feedback); entanglement of clinical and research follow-up as facilitator and deterrent. CONCLUSIONS: The multi-situated approach used, addressing the interplay of the lived experience of individuals, was of most value to understand participation variability under different implemented strategies in-context. Cross-contextual and context-specific situational elements that have been influential factors towards participation and attrition in the cohorts were identified.
Authors: Martha Abshire; Victor D Dinglas; Maan Isabella A Cajita; Michelle N Eakin; Dale M Needham; Cheryl Dennison Himmelfarb Journal: BMC Med Res Methodol Date: 2017-02-20 Impact factor: 4.615
Authors: Ellen Funkhouser; Jennifer Wammack; Cathy Roche; Jared Reis; Stephen Sidney; Pamela Schreiner Journal: Contemp Clin Trials Commun Date: 2017-12-20
Authors: Aurélie Piedvache; Stef van Buuren; Henrique Barros; Ana Isabel Ribeiro; Elizabeth Draper; Jennifer Zeitlin Journal: BMC Med Res Methodol Date: 2021-06-06 Impact factor: 4.615