Parental attitudes to the identification of their infants as carriers of cystic fibrosis by newborn screening

Lewis, Sharon; Curnow, Lisette; Ross, Michael; Massie, John

doi:10.1111/j.1440-1754.2006.00917.x

Cited by 61 publications

(80 citation statements)

References 16 publications

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“…15 While another found residual anxiety among some parents about their child's health and reproductive decisions 6 years after being informed of newborn CF carrier status. 63 This suggests that some parents' information and support needs may not be met. There has been less empirical work conducted with parents of SC carriers following newborn screening but counselling has been advocated, 86 without which it has been suggested results may cause undue anxiety and parents may fail to appreciate the implications of the results.…”

Section: Anxiety and Understanding Following Carrier Resultsmentioning

confidence: 99%

“…57 Research with parents following newborn screening supports disclosure of newborn carrier status. 13,15,[57][58][59][60] However, there is commonly inconsistency in whether specific communication protocols are in place for SC or CF carrier results, 37,[61][62][63] and further research is required into parents' experiences or understanding of such communication 13 and the most effective and acceptable communication models. 8 There remains little guidance on the most appropriate ways to convey carrier status results, 8,41 or research on parents' experiences of receiving carrier results to inform approaches.…”

Section: Summary Of Current Evidencementioning

confidence: 99%

See 1 more Smart Citation

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Kai

Ulph²,

Cullinan³

et al. 2009

Health Technol Assess

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How to obtain copies of this and other HTA programme reports An electronic version of this publication, in Adobe Acrobat format, is available for downloading free of charge for personal use from the HTA website (www.hta.ac.uk). A fully searchable CD-ROM is also available (see below).Printed copies of HTA monographs cost £20 each (post and packing free in the UK) to both public and private sector purchasers from our Despatch Agents.Non-UK purchasers will have to pay a small fee for post and packing. For European countries the cost is £2 per monograph and for the rest of the world £3 per monograph.You can order HTA monographs from our Despatch Agents:-fax (with credit card or official purchase order) -post (with credit card or official purchase order or cheque) -phone during office hours (credit card only).Additionally the HTA website allows you either to pay securely by credit card or to print out your order and then post or fax it. Contact details are as follows: Payment methods Paying by chequeIf you pay by cheque, the cheque must be in pounds sterling, made payable to Direct Mail Works Ltd and drawn on a bank with a UK address. Paying by credit cardThe following cards are accepted by phone, fax, post or via the website ordering pages: Delta, Eurocard, Mastercard, Solo, Switch and Visa. We advise against sending credit card details in a plain email. Paying by official purchase orderYou can post or fax these, but they must be from public bodies (i.e. NHS or universities) within the UK. We cannot at present accept purchase orders from commercial companies or from outside the UK. How do I get a copy of HTA on CD?Please use the form on the HTA website (www.hta.ac.uk/htacd.htm). Or contact Direct Mail Works (see contact details above) by email, post, fax or phone. HTA on CD is currently free of charge worldwide.The website also provides information about the HTA programme and lists the membership of the various committees. HTA NIHR Health Technology Assessment programmeT he Health Technology Assessment (HTA) programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care. The research findings from the HTA programme directly influence decision-making bodies such as the National Institute for Health and Clinical Excellence (NICE) and the National Screening Committee (NSC). HTA findings also help to improve the quality of clinical practice in the NHS indirectly in that they form a key component of the 'National Knowledge Service'. The HTA programme is needs led in that it fills gaps in the evidence needed by the NHS. There are three routes to the start of projects. First is the commissioned route. Suggestions for research are actively sought from people working in t...

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Section: Anxiety and Understanding Following Carrier Resultsmentioning

confidence: 99%

Section: Summary Of Current Evidencementioning

confidence: 99%

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Kai

Ulph²,

Cullinan³

et al. 2009

Health Technol Assess

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show abstract

“…15 This is less commonly documented in the literature and the outcome of communication is often defined by the number of at-risk family members that contact the genetic services. 9 The frequency of contact is estimated to be between 20 and 40%, 18,19 and whereas barriers and facilitators to communication are well documented, 20 -24 the reason at-risk family members do not contact the genetic services is largely unknown. Exploration of families' experiences may further illuminate the process of communicating genetic information and provide evidence-based information for health professionals involved in the provision of genetic services.…”

Section: Introductionmentioning

confidence: 99%

Health first, genetics second: exploring families' experiences of communicating genetic information

et al. 2008

Self Cite

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Genetic information may have health and reproductive implications for the proband and their family members. The responsibility for communicating this information within families generally lies with the proband or consultand. Previous research has explored the barriers and facilitators to communication, particularly in families affected with familial cancer syndromes. This study is an exploration of families' experiences, which aims to elucidate the process of communicating genetic information in families affected with non-cancer genetic conditions. The methodology involved 12 semi-structured interviews with probands, consultands and their family members. There were six different genetic conditions present in the families: adrenoleukodystrophy (n ¼ 3), cystic fibrosis (n ¼ 3), fragile X syndrome (n ¼ 1), haemochromatosis (n ¼ 1), balanced reciprocal chromosomal translocation (n ¼ 3) and Robertsonian chromosomal translocation (n ¼ 1). The results presented arise from two key themes, (1) the diagnosis and (2) post diagnosis. The interview data illustrate that the time of the diagnosis is a traumatic experience for families and that communication stimulated by this event revolves around informing family members about the diagnosis, but not warning them of their genetic risk. Post diagnosis, the collection of information about the genetic condition and continued communication to more distant family members, often using pre-existing family communication patterns, enables the continuation of communication about the genetic condition.

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“…10,33,36,45 A minority of parents continued to think about the test results, 36 worry about the child's health, or remain anxious. 33 One study found that parents of children with false-positive results were more stressed and their relationship with their child more dysfunctional than parents who had children with normal test results. 47 Most studies, however, found little long-term difference in parental depression, 45 anxiety, well-being, or rejection or protection between parents of children with false-positive results and those of children with normal results.…”

Section: Religious Faithmentioning

confidence: 99%

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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Parental attitudes to the identification of their infants as carriers of cystic fibrosis by newborn screening

Cited by 61 publications

References 16 publications

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice

Health first, genetics second: exploring families' experiences of communicating genetic information

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

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