Literature DB >> 17056302

Newborn screening for CF in a regional paediatric centre: the psychosocial effects of false-positive IRT results on parents.

Janette Moran1, Kirsten Quirk, Alistair J A Duff, Keith G Brownlee.   

Abstract

Neonatal screening for cystic fibrosis (CF) has been established in Leeds since 1975. The current method is measuring IRT and genotyping. Newborn screening for CF results in a small but significant number of false positives. This study explored the psychosocial reactions to such results in a group of parents (N=21) using semi-structured interviews. Responses were analysed using descriptive statistics and well-validated content analysis. Mothers described a range of emotions during the screening process including anxiety, distress and upset. Waiting for the repeat IRT test results was identified as the most emotionally difficult stage. Discussion focuses on good practice and implications for CF services.

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Mesh:

Year:  2006        PMID: 17056302     DOI: 10.1016/j.jcf.2006.09.001

Source DB:  PubMed          Journal:  J Cyst Fibros        ISSN: 1569-1993            Impact factor:   5.482


  17 in total

1.  Extra corporeal membrane oxygenation (ECMO) therapy in a 3-year-old child with cystic fibrosis: a tale of hope.

Authors:  Patrick Stafler; Colin Wallis
Journal:  J R Soc Med       Date:  2009-07       Impact factor: 5.344

2.  Psychosocial Distress and Knowledge Deficiencies in Parents of Children in Ireland Who Carry an Altered Cystic Fibrosis Gene.

Authors:  S J Quigley; B Linnane; S Connellan; A Ward; P Ryan
Journal:  J Genet Couns       Date:  2017-09-26       Impact factor: 2.537

3.  Factors that influence parents' experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy.

Authors:  Jenelle L Collins; Alison La Pean; Faith O'Tool; Kerry L Eskra; Sara J Roedl; Audrey Tluczek; Michael H Farrell
Journal:  Patient Educ Couns       Date:  2012-01-11

4.  Factors associated with parental perception of child vulnerability 12 months after abnormal newborn screening results.

Authors:  Audrey Tluczek; Anne Chevalier McKechnie; Roger L Brown
Journal:  Res Nurs Health       Date:  2011-08-24       Impact factor: 2.228

5.  Psychosocial consequences of false-positive newborn screens for cystic fibrosis.

Authors:  Audrey Tluczek; Kate Murphy Orland; Laura Cavanagh
Journal:  Qual Health Res       Date:  2010-09-17

6.  A tailored approach to family-centered genetic counseling for cystic fibrosis newborn screening: the Wisconsin model.

Authors:  Audrey Tluczek; Christina Zaleski; Dania Stachiw-Hietpas; Peggy Modaff; Craig R Adamski; Megan R Nelson; Catherine A Reiser; Sumedha Ghate; Kevin D Josephson
Journal:  J Genet Couns       Date:  2010-10-09       Impact factor: 2.537

7.  Informing parents about positive newborn screen results: parents' recommendations.

Authors:  Natalie Salm; Elena Yetter; Audrey Tluczek
Journal:  J Child Health Care       Date:  2012-09-14       Impact factor: 1.979

8.  Effects of immediate telephone follow-up with providers on sweat chloride test timing after cystic fibrosis newborn screening identifies a single mutation.

Authors:  Alison La Pean; Michael H Farrell; Kerry L Eskra; Philip M Farrell
Journal:  J Pediatr       Date:  2012-10-24       Impact factor: 4.406

Review 9.  Newborn screening for cystic fibrosis: a lesson in public health disparities.

Authors:  Lainie Friedman Ross
Journal:  J Pediatr       Date:  2008-09       Impact factor: 4.406

10.  Understanding sickle cell carrier status identified through newborn screening: a qualitative study.

Authors:  Fiona A Miller; Martha Paynter; Robin Z Hayeems; Julian Little; June C Carroll; Brenda J Wilson; Judith Allanson; Jessica P Bytautas; Pranesh Chakraborty
Journal:  Eur J Hum Genet       Date:  2009-10-07       Impact factor: 4.246

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