ArticleEuropean journal of midwifery2022
Mothering a population: How Danish mothers experience newborn dried blood spot samples and their considerations about re-use of samples for research purposes.
Article in European journal of midwifery, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed, 1 citations in OpenAlex.
- Current Status of Newborn Bloodspot Screening Worldwide 2024: A Comprehensive Review of Recent Activities (2020-2023).International journal of neonatal screening · 2024Review
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Authors and funding
2 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionNewborn dried blood spot (NDBS) samples have a primary clinical purpose of screening, but often also a secondary purpose of re-use for research purposes. This study investigates how Danish mothers experience the sample being taken, their considerations about potential re-use for research, and their reflections on the level of information they receive about NDBS samples and their re-use for research purposes.
methodsThis study is based on semi-structured interviews with 19 mothers of newborn babies, conducted within the first year after the birth. Mothers were recruited through online media and interviewed in their own homes or at the university. All interviews were coded thematically with an abductive approach.
resultsGenerally, mothers have difficulties in recollecting the NDBS sample. Overall, they are pleased with the re-use of samples for research purposes. However, some mothers are concerned about the consent procedure. The mothers did not have one specific attitude towards more information about the research done using newborn samples. Based on our findings, we recommend a higher level of transparency regarding national genetic research in general; and, for the NDBS samples specifically, a more complete information and consent procedure. Further, we encourage more studies into what kinds of information parents might find useful about research based on NDBS samples.
conclusionsMothers do not always remember experiencing the NDBS sample, are generally positive towards re-use for research purposes, but unsure about best information level.
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Registered trials
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