Mothers’ accounts of screening newborn babies in Wales (UK)

Parsons, Evelyn; King, Janet; Israel, Janet Alice; Bradley, Don M.

doi:10.1016/j.midw.2006.05.008

Cited by 29 publications

(42 citation statements)

References 6 publications

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“…26,28,34,40,45 Most parents do not feel that their consent should be required for screening, 26,34 yet informed consent has been shown to increase parental knowledge of newborn screening during research studies. 32,40 During routine care, however, many women sign a consent form without reading it. 28 Women who had difficult labors or whose infants had health problems found it especially difficult to comprehend the provided brochures on newborn screening just after delivery.…”

Section: Knowledge Of Newborn Screeningmentioning

confidence: 99%

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Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Whitehead¹,

Brown²,

Layton³

2010

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Newborn screening for genetic conditions is conducted in all 50 states, but parents' opinions of such screening are largely unknown. As newborn screening has expanded from a few relatively common conditions requiring early treatment to a broader spectrum of conditions with uncertain prognosis, it is important to understand parents’ views. Stated preference surveys provide quantifiable data on parent preferences about features of newborn screening tests, the economic value of testing, and the effect of a test’s features on its probable uptake and value. We conducted formative research and developed a stated preference survey on parents' preferences regarding voluntary newborn screening. We reviewed the literature on parents’ attitudes toward newborn screening and factors related to those attitudes and developed a list of condition and test attributes. We narrowed the list by expert review and conducted focus groups with parents of infants to determine if they understood the attributes and to see which attributes parents viewed as relevant. We found that some parents struggled with the probability-based attributes. The most relevant attributes were developmental disability, physical disability, incidence, recurrence, lifespan, sensitivity, and cost. The survey developed from this study could provide data for economic evaluation, test prioritization, and educational material development.

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Section: Knowledge Of Newborn Screeningmentioning

confidence: 99%

“…28 Women who had difficult labors or whose infants had health problems found it especially difficult to comprehend the provided brochures on newborn screening just after delivery. 28,40 Parents of children <1 year of age (51) Current practice…”

Section: Knowledge Of Newborn Screeningmentioning

confidence: 99%

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Whitehead¹,

Brown²,

Layton³

2010

View full text Add to dashboard Cite

show abstract

“…25,28,32,40,47,49 Parents who are aware of the screening are not knowledgeable about the process of reporting screening results or the conditions for which newborns are screened. 25,28 Many parents confuse genetic screening with testing for jaundice, infections, or drug exposure.…”

Section: Knowledge Of Newborn Screeningmentioning

confidence: 99%

“…Most parents would like more information on newborn screening 26,28,34,40 and feel that improved information would be needed even more if screening were expanded to include conditions that do not require immediate treatment. 30 Parents would prefer to receive information on newborn screening during pregnancy.…”

Section: Knowledge Of Newborn Screeningmentioning

confidence: 99%

“…30 Parents would prefer to receive information on newborn screening during pregnancy. 26,28,34,40,45 Most parents do not feel that their consent should be required for screening, 26,34 yet informed consent has been shown to increase parental knowledge of newborn screening during research studies. 32,40 During routine care, however, many women sign a consent form without reading it.…”

Section: Knowledge Of Newborn Screeningmentioning

confidence: 99%

See 1 more Smart Citation

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Whitehead¹,

Brown²,

Layton³

2010

View full text Add to dashboard Cite

Newborn Screening Programmes

Parsons¹,

Bradley²

2008

Encyclopedia of Life Sciences

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Newborn screening programmes are used to detect diseases in neonates by analysing a blood sample collected by heel‐prick, usually during the first week of life. Whereas early programmes were started with the aim of preventing mental retardation, advances in technology now mean that a variety of disorders, where treatment is more problematic, or even nonexistent, can be identified. This has broadened the scope of newborn screening and presents service providers with an increasing need to address issues about consent.

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Mothers’ accounts of screening newborn babies in Wales (UK)

Cited by 29 publications

References 6 publications

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Newborn Screening Programmes

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