Literature DB >> 25104730

Primary care providers' experiences notifying parents of cystic fibrosis newborn screening results.

Caitlin Finan1, Samya Z Nasr1, Erin Rothwell2, Beth A Tarini3.   

Abstract

This study examines primary care provider (PCP) experiences with the initial parental disclosure of cystic fibrosis (CF) newborn screening (NBS) results in order to identify methods to improve parent-provider communication during the CF NBS process. PCPs of infants who received positive CF NBS results participated in semistructured phone interviews. Interviews were analyzed using a qualitative content analysis. PCPs acknowledged the difficulty of "breaking bad news" to parents, and emphasized minimizing parental anxiety and maximizing parental understanding. PCPs used a variety of methods to notify parents, and shared varying information about the significance of the results. Variation in the method of parental notification, information discussed, and attention to parents' emotional needs may limit successful follow-up of children with positive CF NBS results. A multifaceted intervention to improve PCP knowledge, management, and communication could improve provider confidence, optimize information transfer, and minimize parental distress during the initial disclosure of CF NBS results.
© The Author(s) 2014.

Entities:  

Keywords:  communication; cystic fibrosis; newborn screening

Mesh:

Year:  2014        PMID: 25104730      PMCID: PMC4257864          DOI: 10.1177/0009922814545619

Source DB:  PubMed          Journal:  Clin Pediatr (Phila)        ISSN: 0009-9228            Impact factor:   1.168


  18 in total

1.  Improving communication between doctors and parents after newborn screening.

Authors:  Michael H Farrell; Stephanie A Christopher; Audrey Tluczek; Karen Kennedy-Parker; Alison La Pean; Kerry Eskra; Jenelle Collins; Gary Hoffman; Julie Panepinto; Philip M Farrell
Journal:  WMJ       Date:  2011-10

2.  Child health providers' precautionary discussion of emotions during communication about results of newborn genetic screening.

Authors:  Michael H Farrell; Jodi Speiser; Lindsay Deuster; Stephanie Christopher
Journal:  Arch Pediatr Adolesc Med       Date:  2012-01

Review 3.  Information flow after a positive newborn screening for cystic fibrosis.

Authors:  James Price Dillard; Audrey Tluczek
Journal:  J Pediatr       Date:  2005-09       Impact factor: 4.406

4.  Content of communication by pediatric residents after newborn genetic screening.

Authors:  Michael H Farrell; Alison La Pean; Lynnea Ladouceur
Journal:  Pediatrics       Date:  2005-12       Impact factor: 7.124

5.  Initially misleading communication of carrier results after newborn genetic screening.

Authors:  Alison La Pean; Michael H Farrell
Journal:  Pediatrics       Date:  2005-12       Impact factor: 7.124

6.  Recommendations for effective newborn screening communication: results of focus groups with parents, providers, and experts.

Authors:  Terry C Davis; Sharon G Humiston; Connie L Arnold; Joseph A Bocchini; Pat F Bass; Estela M Kennen; Anna Bocchini; Penny Kyler; Michele Lloyd-Puryear
Journal:  Pediatrics       Date:  2006-05       Impact factor: 7.124

7.  Psychosocial risk associated with newborn screening for cystic fibrosis: parents' experience while awaiting the sweat-test appointment.

Authors:  Audrey Tluczek; Rebecca L Koscik; Philip M Farrell; Michael J Rock
Journal:  Pediatrics       Date:  2005-06       Impact factor: 7.124

8.  Expanded newborn screening for biochemical disorders: the effect of a false-positive result.

Authors:  Elizabeth A Gurian; Daniel D Kinnamon; Judith J Henry; Susan E Waisbren
Journal:  Pediatrics       Date:  2006-06       Impact factor: 7.124

9.  Primary care physicians' attitudes regarding follow-up care for children with positive newborn screening results.

Authors:  Alex R Kemper; Rebecca L Uren; Kathryn L Moseley; Sarah J Clark
Journal:  Pediatrics       Date:  2006-11       Impact factor: 7.124

10.  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

View more
  8 in total

1.  Primary care providers' role in newborn screening result notification for cystic fibrosis.

Authors:  Robin Z Hayeems; Fiona A Miller; Carolyn J Barg; Yvonne Bombard; Pranesh Chakraborty; Beth K Potter; Sarah Patton; Jessica Peace Bytautas; Karen Tam; Louise Taylor; Elizabeth Kerr; Christine Davies; Jennifer Milburn; Felix Ratjen; Astrid Guttmann; June C Carroll
Journal:  Can Fam Physician       Date:  2021-06       Impact factor: 3.275

2.  Parent's Satisfaction of Universal Newborn Hearing Screening Program in Iran.

Authors:  Arash Bayat; Farzaneh Zamiri Abdollahi; Nader Saki; Farzad Faraji Khiavi; Saeed Mohammadian; Mohammadsaleh Moosapour Bardsiri; Reza Hoseinabadi
Journal:  Indian J Otolaryngol Head Neck Surg       Date:  2021-01-09

3.  Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents.

Authors:  Katie Carpenter; Anja Wittkowski; Dougal J Hare; Emma Medford; Stewart Rust; Simon A Jones; Debbie M Smith
Journal:  J Genet Couns       Date:  2018-02-21       Impact factor: 2.537

4.  "We needed this": perspectives of parents and healthcare professionals involved in a pilot newborn screening program for spinal muscular atrophy.

Authors:  Didu S T Kariyawasam; Arlene M D'Silva; Janine Vetsch; Claire E Wakefield; Veronica Wiley; Michelle A Farrar
Journal:  EClinicalMedicine       Date:  2021-02-19

5.  Severe Combined Immunodeficiency: Knowledge and Information Needs Among Healthcare Providers.

Authors:  Oksana Kutsa; Angela Gwaltney; Alissa Creamer; Melissa Raspa
Journal:  Front Pediatr       Date:  2022-02-21       Impact factor: 3.418

6.  Pain points in parents' interactions with newborn screening systems: a qualitative study.

Authors:  Mike Conway; Truc Thuy Vuong; Kim Hart; Andreas Rohrwasser; Karen Eilbeck
Journal:  BMC Pediatr       Date:  2022-03-31       Impact factor: 2.125

7.  Communication of an Abnormal Metabolic New-Born Screening Result in The Netherlands: The Parental Perspective.

Authors:  Sietske Haitjema; Charlotte M A Lubout; Justine H M Zijlstra; Bruce H R Wolffenbuttel; Francjan J van Spronsen
Journal:  Nutrients       Date:  2022-09-23       Impact factor: 6.706

8.  The Value of Cognitive Pretesting: Improving Validity and Revealing Blind Spots through the Development of a Newborn Screening Parent Experiences Survey.

Authors:  Norma-Jean Simon; Anne Atkins; Brianne Miller; Natasha Bonhomme; Beth Tarini
Journal:  Int J Neonatal Screen       Date:  2021-07-08
  8 in total

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