Participant engagement and involvement in longitudinal cohort studies: qualitative insights from a selection of pregnancy and birth, twin, and family-based population cohort studies.

ABSTRACT:

Background

Longitudinal cohort studies are pivotal to understand how socioeconomic, environmental, biological, and lifestyle factors influence health and disease. The added value of cohort studies increases as they accumulate life course data and expand across generations. Ensuring that participants stay motivated to contribute over decades of follow-up is, however, challenging. Participant engagement and involvement (PEI) aims to secure the long-term commitment of participants and promote researcher-participant interaction. This study explored PEI practices in a selection of pregnancy and birth, twin, and family-based population cohort studies.

Methods

Purposive sampling was used to identify cohorts in Europe, Australia and New Zealand. Fourteen semi-structured digital inte

SUBMITTER: Budin-Ljosne I 

PROVIDER: S-EPMC11613753 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature