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Was it worth it? Older adults' experiences of participating in a population-based cohort study - a focus group study

Journal article
Authors Synneve Dahlin-Ivanoff
Therese Rydberg Sterner
Kaj Blennow
Ingmar Skoog
H. F. Erhag
Published in BMC Geriatr
Volume 19
Issue 1
Publication year 2019
Published at Institute of Neuroscience and Physiology, Department of Health and Rehabilitation
Institute of Neuroscience and Physiology
Institute of Neuroscience and Physiology, Department of Psychiatry and Neurochemistry
Institute of Neuroscience and Physiology, Department of Clinical Neuroscience
Centre for Ageing and Health (Agecap)
Language en
Keywords Longitudinal population-based cohort study, Research participation, Health research, Focus group method, Older adults, H70, health literacy, care, attrition, altruism, trust, Geriatrics & Gerontology
Subject categories Geriatrics


Background At present, we know relatively little about priorities and problems with topics that older adults experience when completing different examinations in longitudinal population-based studies. To examine these topics, research must be adapted to investigate the meanings, motivations, and interpretations of the individual participants themselves. Therefore, the present study aimed to explore older adults' motives, understandings and experiences regarding participating in the Gothenburg H70 Birth Cohort Studies (the H-70 study). Methods Focus group discussions were used. A total of thirty-eight persons, 19 women and 19 men participated in nine focus groups. A strategic sampling technique was used to ensure that the focus group participants represented the larger population. Results The results supported the overall theme: "It was well worth the effort," which summarized how the participants felt about the population health study. The following specific themes were also identified: an intense event, for the benefit of oneself and others, confidence in health research and the researcher, key decisions about test outcomes and the survey raising questions and providing few answers. Conclusions Knowledge of priorities and problems with topics experienced by older adults completing different examinations when participating in longitudinal population-based studies is crucial for research to improve the health and wellbeing of older people. To date, older people's involvement in population-based cohort studies has largely been as research subjects. This study is a first step toward the participants taking a more active part by allowing them to share their experiences which can be used to improve the research procedures. This requires the participation of older adults in collaboration with the researchers, to ensure the quality of longitudinal studies of older adults. Therefore, our intention when it comes to future research will be to involve older adults-the target group-in the research procedure.

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