Literature DB >> 15959646

Experiences of prenatal diagnosis of spina bifida or hydrocephalus in parents who decide to continue with their pregnancy.

Julie Chaplin1, Robert Schweitzer, Shelley Perkoulidis.   

Abstract

The current study aimed to gain an understanding of the perspectives of those parents provided with a prenatal diagnosis of spina bifida or hydrocephalus and who decided to continue with their pregnancy. Qualitative interviews were conducted with 15 parents who learned of their unborn child's spina bifida and/or hydrocephalus in the prenatal period. The interviewer asked parents about their experiences of receiving a prenatal diagnosis and their experience of coping throughout the remainder of the antenatal period. Parents' reactions and experiences fell into five domains: response to diagnosis, experience of medical systems, information gathering, decision-making regarding continuation of the pregnancy following diagnosis and responses of significant others. Each of these domains is explicated. The findings derived from the current study have implications for professionals who provide support to parents during the prenatal period. Future research needs to further explore the common and unique issues for parents living in both urban and rural areas.

Entities:  

Keywords:  Empirical Approach; Genetics and Reproduction

Mesh:

Year:  2005        PMID: 15959646     DOI: 10.1007/s10897-005-0488-9

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


  23 in total

1.  Routine second-trimester ultrasonography in the United States: a cost-benefit analysis.

Authors:  A M Vintzileos; C V Ananth; J C Smulian; T Beazoglou; R A Knuppel
Journal:  Am J Obstet Gynecol       Date:  2000-03       Impact factor: 8.661

2.  Genetic counseling after abnormal prenatal diagnosis: facilitating coping in families who continue their pregnancies.

Authors:  Jill S Allen; Lynda C Mulhauser
Journal:  J Genet Couns       Date:  1995-12       Impact factor: 2.537

3.  Parents' needs after ultrasound diagnosis of a fetal malformation: an empirical deficit analysis.

Authors:  W Schuth; U Karck; C Wilhelm; S Reisch
Journal:  Ultrasound Obstet Gynecol       Date:  1994-03       Impact factor: 7.299

4.  Determinants of parental decisions to abort for chromosome abnormalities.

Authors:  A Drugan; A Greb; M P Johnson; E L Krivchenia; W R Uhlmann; K S Moghissi; M I Evans
Journal:  Prenat Diagn       Date:  1990-08       Impact factor: 3.050

5.  Female and male physicians' attitudes toward prenatal diagnosis: a Pan-Canadian survey.

Authors:  L Bouchard; M Renaud
Journal:  Soc Sci Med       Date:  1997-02       Impact factor: 4.634

6.  Prenatal consultation after a fetal anomaly scan: videotaped exploration of physician's attitude and patient's satisfaction.

Authors:  J A Hunfeld; A Leurs; M De Jong; M L Oberstein; A Tibben; J W Wladimiroff; H I Wildschut; J Passchier
Journal:  Prenat Diagn       Date:  1999-11       Impact factor: 3.050

7.  Emotional reactions in women in late pregnancy (24 weeks or longer) following the ultrasound diagnosis of a severe or lethal fetal malformation.

Authors:  J A Hunfeld; J W Wladimiroff; J Passchier; M U Venema-Van Uden; P G Frets; F Verhage
Journal:  Prenat Diagn       Date:  1993-07       Impact factor: 3.050

8.  Determinants of parental decision to abort or continue after non-aneuploid ultrasound-detected fetal abnormalities.

Authors:  P G Pryde; N B Isada; M Hallak; M P Johnson; A E Odgers; M I Evans
Journal:  Obstet Gynecol       Date:  1992-07       Impact factor: 7.661

9.  Determinants of parental decisions after the prenatal diagnosis of Down syndrome.

Authors:  R L Kramer; R K Jarve; Y Yaron; M P Johnson; J Lampinen; S B Kasperski; M I Evans
Journal:  Am J Med Genet       Date:  1998-09-23

10.  Counselling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.

Authors:  T Marteau; H Drake; M Bobrow
Journal:  J Med Genet       Date:  1994-11       Impact factor: 6.318

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  11 in total

1.  Exploring adoption with clients: the need for adoption education within the genetic counseling profession.

Authors:  Cassandra L Perry; Martha J Henry
Journal:  J Genet Couns       Date:  2010-03-16       Impact factor: 2.537

Review 2.  Parental decision-making for medically complex infants and children: an integrated literature review.

Authors:  Kimberly A Allen
Journal:  Int J Nurs Stud       Date:  2014-02-20       Impact factor: 5.837

3.  Genetic testing likelihood: the impact of abortion views and quality of life information on women's decisions.

Authors:  Jessica L Wilson; Gail M Ferguson; Judith M Thorn
Journal:  J Genet Couns       Date:  2010-11-06       Impact factor: 2.537

Review 4.  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

5.  Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality.

Authors:  Emma F France; Louise Locock; Kate Hunt; Sue Ziebland; Kate Field; Sally Wyke
Journal:  Health Expect       Date:  2011-05-30       Impact factor: 3.377

6.  A routine tool with far-reaching influence: Australian midwives' views on the use of ultrasound during pregnancy.

Authors:  Kristina Edvardsson; Ingrid Mogren; Ann Lalos; Margareta Persson; Rhonda Small
Journal:  BMC Pregnancy Childbirth       Date:  2015-08-27       Impact factor: 3.007

Review 7.  A review of the social, psychological, and economic burdens experienced by people with spina bifida and their caregivers.

Authors:  Diana Rofail; Laura Maguire; Marion Kissner; Antje Colligs; Linda Abetz-Webb
Journal:  Neurol Ther       Date:  2013-03-22

Review 8.  The impact of spina bifida on caregivers.

Authors:  Diana Rofail; Laura Maguire; Rebecca Heelis; Antje Colligs; Marion Lindemann; Linda Abetz
Journal:  Neurol Ther       Date:  2012-10-11

9.  Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction.

Authors:  Shih-Chun Lin; Mei-Chih Huang
Journal:  Int J Qual Stud Health Well-being       Date:  2020-12

10.  From crisis to self-confidence and adaptation; Experiences of being a parent of a child with VACTERL association - A complex congenital malformation.

Authors:  Ann-Marie Kassa; Helene Engstrand Lilja; Gunn Engvall
Journal:  PLoS One       Date:  2019-04-19       Impact factor: 3.240

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