University of Oulu

Rönkä, A. R. (2022). “From Birth to Death, From Beginning to End”: Participant Experience and the Meaning of Research Participation in a Longitudinal Birth Cohort Study. SAGE Open.

“From birth to death, from beginning to end” : participant experience and the meaning of research participation in a longitudinal birth cohort study

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Author: Rönkä, Anna Reetta1
Organizations: 1History of Sciences and Ideas, Faculty of Humanities, University of Oulu, P.O. Box 8000, Oulu 90014, Finland
Format: article
Version: published version
Access: open
Online Access: PDF Full Text (PDF, 0.4 MB)
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Language: English
Published: SAGE Publications, 2022
Publish Date: 2022-07-18


Research participants are vital for the success of a birth cohort study. Despite their scientific importance and large participant numbers, research on participant experience in birth cohort studies is scarce. This study explores participant experience, its different dimensions and meaning of the experience for the participants’ lives. The data comes from the Northern Finland Birth Cohort 1966. In total, 49 semi-structured interviews were conducted with participants having full participation records and then subjected to qualitative content and thematic analysis. According to the findings, the participant experience is multidimensional, consisting of four dimensions; personal, relational, societal, and scientific. The experience evoked both positive and negative feelings and a sense of belongingness. Motivations to continue, perceived benefits of the study, consequences of participation, and the theme of trust were grouped under the four dimensions. The meaning of the study participation, and the level of personal investment and involvement in the study varied a lot among active study participants, forming a continuum from a very strong to a weak. The findings of this study contribute to the theoretical conceptualization of the participant experience. They help to better understand the participant’s perspective, and the different aspects that participating in a longitudinal research project may entail as a subjective and a relational experience. The results may contribute to research design and aid in enhancing participant satisfaction. That is important, as conducting high-quality research depends on motivated and committed research participants.

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Series: Sage open
ISSN: 2158-2440
ISSN-E: 2158-2440
ISSN-L: 2158-2440
Volume: 12
Issue: 2
Article number: 215824402210992
DOI: 10.1177/21582440221099297
Type of Publication: A1 Journal article – refereed
Field of Science: 616 Other humanities
Funding: The work was funded by the Academy of Finland project funding (grant number 318458).
Academy of Finland Grant Number: 318458
Detailed Information: 318458 (Academy of Finland Funding decision)
Copyright information: © The Author(s) 2022. This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (