Literature DB >> 18481163

A qualitative description of receiving a diagnosis of clefting in the prenatal or postnatal period.

Rachel Nusbaum1, Robin E Grubs, Joseph E Losee, Carla Weidman, Matthew D Ford, Mary L Marazita.   

Abstract

This study investigated the experience of receiving a diagnosis of clefting in the prenatal or postnatal period. Open-ended interviews were conducted with 20 parents of children with cleft lip with or without cleft palate. Interviews were transcribed and analyzed using a qualitative descriptive approach with an emphasis on thematic analysis. Common themes emerged from participants' responses regarding the delivery of the diagnosis, preparation for the birth of their child, advantages and disadvantages of prenatal diagnosis, use of the Internet, views on abortion and genetic testing, among other issues. All participants in the prenatal group indicated they were satisfied they learned of the cleft before the birth of their child. Some participants in the postnatal group would rather have received the diagnosis prenatally, while others were content with learning of the diagnosis in the delivery room. Greater awareness of the parental experience of the timing of receiving a cleft diagnosis may assist health care professionals in providing care for these families.

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Year:  2008        PMID: 18481163     DOI: 10.1007/s10897-008-9152-5

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  19 in total

1.  The early prenatal diagnosis of cleft lip and the decision-making process.

Authors:  Z Blumenfeld; I Blumenfeld; M Bronshtein
Journal:  Cleft Palate Craniofac J       Date:  1999-03

2.  Nuance, complexity, and context: qualitative methods in genetic counseling research.

Authors:  Diane Beeson
Journal:  J Genet Couns       Date:  1997-03       Impact factor: 2.537

Review 3.  Prenatal diagnosis of cleft lip and palate.

Authors:  N Johnson; Jonathan R Sandy
Journal:  Cleft Palate Craniofac J       Date:  2003-03

4.  Parental experience of a pediatric genetic referral.

Authors:  Heather Skirton
Journal:  MCN Am J Matern Child Nurs       Date:  2006 May-Jun       Impact factor: 1.412

5.  The impact of antenatal diagnosis on the effectiveness and timing of counselling for cleft lip and palate.

Authors:  A Davalbhakta; P N Hall
Journal:  Br J Plast Surg       Date:  2000-06

6.  Empowering children and families with information technology.

Authors:  D M D'Alessandro; N P Dosa
Journal:  Arch Pediatr Adolesc Med       Date:  2001-10

7.  Medical genetics on the cleft palate-craniofacial team: understanding parental preference.

Authors:  N W Berk; M L Marazita; M E Cooper
Journal:  Cleft Palate Craniofac J       Date:  1999-01

8.  Physicians and the communication of "bad news": parent experiences of being informed of their child's cleft lip and/or palate.

Authors:  R P Strauss; M C Sharp; S C Lorch; B Kachalia
Journal:  Pediatrics       Date:  1995-07       Impact factor: 7.124

9.  Parental evaluation of informing interviews for cleft lip and/or palate.

Authors:  Abigail L Byrnes; Nancy W Berk; Margaret E Cooper; Mary L Marazita
Journal:  Pediatrics       Date:  2003-08       Impact factor: 7.124

10.  Affective state of women following a prenatal diagnosis: predictors of a negative psychological outcome.

Authors:  K Leithner; A Maar; M Fischer-Kern; E Hilger; H Löffler-Stastka; E Ponocny-Seliger
Journal:  Ultrasound Obstet Gynecol       Date:  2004-03       Impact factor: 7.299

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  12 in total

1.  The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study.

Authors:  Lynley J Donoghue; Margaret A Sahhar; Ravi Savarirayan; Supriya Raj; Nicky M Kilpatrick; Laura E Forrest
Journal:  J Community Genet       Date:  2014-02-06

Review 2.  Health-care provider communication with expectant parents during a prenatal diagnosis: an integrative review.

Authors:  A L Kratovil; W A Julion
Journal:  J Perinatol       Date:  2016-08-11       Impact factor: 2.521

3.  Obstetrician-Gynecologists' Knowledge and Awareness on Nasoalveolar Molding in Newborns with Cleft Lip and Palate.

Authors:  Kevser Kurt Demirsoy; Semi Çalış; Süleyman Kutalmış Büyük
Journal:  Turk J Orthod       Date:  2022-03

Review 4.  Educational paper: parenting a child with a disfiguring condition-how (well) do parents adapt?

Authors:  Willem H Leemreis; Jolanda M E Okkerse; Peter C J de Laat; Gerard C Madern; Léon N A van Adrichem; Frank Verhulst; Arnold P Oranje
Journal:  Eur J Pediatr       Date:  2013-06-18       Impact factor: 3.183

5.  Towards a new procreation ethic: the exemplary instance of cleft lip and palate.

Authors:  Gaëlle Le Dref; Bruno Grollemund; Anne Danion-Grilliat; Jean-Christophe Weber
Journal:  Med Health Care Philos       Date:  2013-08

6.  Relational development in children with cleft lip and palate: influence of the waiting period prior to the first surgical intervention and parental psychological perceptions of the abnormality.

Authors:  Bruno Grollemund; Antoine Guedeney; Marie-Paule Vazquez; Arnaud Picard; Véronique Soupre; Philippe Pellerin; Etienne Simon; Michel Velten; Caroline Dissaux; Isabelle Kauffmann; Catherine Bruant-Rodier; Anne Danion-Grilliat
Journal:  BMC Pediatr       Date:  2012-06-08       Impact factor: 2.125

7.  Attitudes of pregnant women and mothers of children with orofacial clefts toward prenatal diagnosis of nonsyndromic orofacial clefts in a semiurban set-up in India.

Authors:  Poornima Kadagad; Pascal Pinto; Rajesh Powar
Journal:  Indian J Plast Surg       Date:  2011-09

8.  The Importance of Multidisciplinary Management during Prenatal Care for Cleft Lip and Palate.

Authors:  Hyun Ho Han; Eun Jeong Choi; Ji Min Kim; Jong Chul Shin; Jong Won Rhie
Journal:  Arch Plast Surg       Date:  2016-03-18

9.  "People look and ask lots of questions": caregivers' perceptions of healthcare provision and support for children born with cleft lip and palate.

Authors:  Phumzile Hlongwa; Laetitia C Rispel
Journal:  BMC Public Health       Date:  2018-04-16       Impact factor: 3.295

10.  Prenatal ultrasonographic diagnosis of cleft lip with or without cleft palate; pitfalls and considerations.

Authors:  Dong Wook Kim; Seung-Won Chung; Hwi-Dong Jung; Young-Soo Jung
Journal:  Maxillofac Plast Reconstr Surg       Date:  2015-08-14
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