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Experiences of Prenatal Diagnosis of Spina Bifida or Hydrocephalus in Parents Who Decide to Continue with Their Pregnancy

  • Original Research
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Journal of Genetic Counseling

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.

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References

  • Abramsky, L., Hall, S., Levitan, J., & Marteau, T. M. (2001). What parents are told after prenatal diagnosis of a sex chromosome abnormality: Interview and questionnaire study. Br Med J, 322, 463–466.

    CAS  Google Scholar 

  • Boyd, P. A., Wellesley, D. G., De Walle, P., Tenconi, R., Garcia-Minaur, S., Zandwijken, G. R., Stoll, C., & Clementi, M. (2000). Evaluation of the prenatal diagnosis of neural tube defects by foetal ultrasonographic examination in different centres across Europe. J. Med Screening, 7(4), 169–174.

    Article  CAS  Google Scholar 

  • Douchard, L., & Renaud, M. (1997). Female and male physicians’ attitudes toward prenatal diagnosis: A Pan-Canadian survey. Soc Sci Med, 44, 381–392.

    Article  PubMed  Google Scholar 

  • Drugan, A., Greb, A., Johnson, M. P., Krivchenia, L., Uhlmann, W. R., Moghissi, K. S., & Evans, M. I. (1990). Determinants of parental decisions to abort for chromosome abnormalities. Prenat Diagn, 10, 483–490.

    CAS  PubMed  Google Scholar 

  • Fonda Allen, J. S., & Mulhauser, L. C. (1995). Genetic counselling after abnormal prenatal diagnosis: Facilitating coping in families who continue their pregnancies. J Genet Couns, 4, 251–265.

    Article  PubMed  Google Scholar 

  • Grevengood, C., Shulman, L. P., Dungan, J. S., Martens, P., Phillips, O. P., Emerson B. S., Felker, R. E., Simpson, J. L., & Elias, S. (1994). Severity of abnormality influences decision to terminate pregnancy affected with foetal neural tube defects. Foetal Diagn Ther, 9, 273–77.

    CAS  Google Scholar 

  • Helm, D. T., Miranda, S., & Chedd, N. A. (1998). Prenatal diagnosis of Down’s Syndrome: Mothers’ reflections on supports needed from diagnosis to birth. Ment Retard, 36, 55–61.

    Article  CAS  PubMed  Google Scholar 

  • Hill, C. E., Thompson, B. J., & Williams, E. (1997). A guide to conducting consensual qualitative research. Couns Psychol, 25, 517–572.

    Google Scholar 

  • Holmes-Siedel, M., Ryynanen, M., & Lindenbaum, R. H. (1987). Parental decisions regarding termination of pregnancy following the prenatal detection of sex chromosome anomalies. Prenat Diagn, 7, 239–244.

    PubMed  Google Scholar 

  • Hunfeld, J. A. M., Leurs, A., de Jong, M., Oberstein, N., Tibben, A., Wladimiroff, J. W., Wildschup, H. J., & Passchier, J. (1999). Prenatal consultation after a fetal anomaly scan: Videotaped exploration of physician’s attitude and patient’s satisfaction. Prenat Diagn, 19, 1043–47.

    Article  CAS  PubMed  Google Scholar 

  • Hunfeld, J. A. M., Wladimiroff, J. W., Passchier, J., Venema-van Uden, E. M., Frets, P. G., & Verhage, F. (1993). Emotional reactions in women in late pregnancy (24 weeks or longer) following the ultrasound diagnosis of a severe or lethal fetal malformation. Prenat Diagn, 13, 603–612.

    CAS  PubMed  Google Scholar 

  • Jorgenson, C., Uddenberg, N., & Ursing, I. (1985). Ultrasound diagnosis of fetal malformation in the second trimester: The psychological reactions of the women. J Psycho Obstet and Gynaecol, 4, 31–40.

    Google Scholar 

  • Kramer, R. L., Jarve, R. K., Yaron, Y., Johnson, M. P., Lampinen, J., Kasperski, S. B., & Evans, M. I. (1998). Determinants of parental decisions after the prenatal diagnosis of Down’s Syndrome. Am J Med Genet, 79, 172–174.

    Article  CAS  PubMed  Google Scholar 

  • Langer, M., & Ringler, M. (1989). Prospective counselling after prenatal diagnosis of fetal malformations: Interventions and parental reactions. Acta Obstet Gyneco Scand, 68, 323–329.

    CAS  Google Scholar 

  • Marteau, T., Drake, H., & Bobrow, M. (1994). Counselling following diagnosis of a fetal abnormality: The differing approaches of obstetricians, clinical geneticists and genetic nurses. J Med Genet, 31, 864–867.

    CAS  PubMed  Google Scholar 

  • McLeod, J. (1994). Doing counselling research. London: Sage Publications.

    Google Scholar 

  • Palmer, S., Spencer, J., Kushnick, T., Wiley, J., & Bowyer, S. (1993). Follow-up survey of pregnancies with diagnoses of chromosomal abnormality. J Genet Couns, 2(3), 139–152.

    Article  Google Scholar 

  • Pryde, P. G., Isada, N. B., Hallak, M., Johnson, M., Odgers, A., & Evans, M. I. (1992). Determinants of parental decision to abort or continue after non-aneuploid ultrasound-detected fetal abnormalities. Obstet Gynecol, 80, 52–56.

    CAS  PubMed  Google Scholar 

  • Rothman, B. (1988). The tentative pregnancy—prenatal diagnosis and the future of motherhood. London: Unwin Hyman.

    Google Scholar 

  • Sandelowski, M., & Corson Jones, L. (1996). Healing fictions: Stories of choosing in the aftermath of the detection of fetal anomalies. Soc Sci Med, 42(3), 353–361.

    Article  CAS  PubMed  Google Scholar 

  • Schuth, W., Carck, U., Wilhelm, C., & Reisch, S. (1994). Parents’ needs after ultrasound diagnosis of a foetal malformation: An empirical deficit analysis. Ultrasound in Obstetrics and Gynecology: The Official Journal of the International Society of Ultrasound in Obstetrics and Gynecology, 4(2), 124–129.

    Google Scholar 

  • Statham, H., Solomou, W., & Chitty, L. (2000). Prenatal diagnosis of foetal abnormality: Psychological effects on women in low risk pregnancies. Best Pract Res Clin Obstet Gynaecol, 14(4), 731–147.

    Article  CAS  Google Scholar 

  • Statham, H., Solomou, W., & Green, J. M. (2003a) Continuing a pregnancy after the diagnosis of an abnormality: Parents’ experiences. In L. Abramsky & J. Chapple (Eds.), Prenatal diagnosis: The human side (2nd ed.). Cheltenham: Nelson Thornes.

    Google Scholar 

  • Statham, H., Solomou, W., & Green, J. M. (2003b). Communication of prenatal screening and diagnosis results to primary-care health professionals. Public Health, 117(5), 348–357.

    Article  Google Scholar 

  • Steinhorn, R. H. (1998). Prenatal ultrasonography: First do no harm? Lancet, 352, 1568–1569.

    Article  CAS  PubMed  Google Scholar 

  • Tannebaurn, H. L., Perlis, T. E., Arbeitel, B. E., & Hsu, L. Y. (1986). Analysis of decision to continue or terminate pregnancies diagnosed with sex chromosome abnormalities by severity of prognosis, socioeconomic level and sex of fetus. Am J Med Genet, 39, A183.

    Google Scholar 

  • Verp, M. S., Bombard, A. T., Simpson, J., & Elias, S. (1988). Parental decision following prenatal diagnosis of fetal chromosome anomalies. Am J Med Genet, 29, 613–622.

    Article  CAS  PubMed  Google Scholar 

  • Vos, J. M., Offringa, M., Bilardo, C. M., Lijmer, J. G., & Barth, P. G. (2000). Sensitive and specific screening for detection of Spina Bifida by echography in the second trimester: Systematic review and meta-analysis. Nederlands Tijdschrift Voor Geneeskunde, 144(36), 1736–1741. (abstract in English)

    CAS  PubMed  Google Scholar 

  • Vintzileos, A. M., Ananth, C. V., Smulian, J. C., Beazoglou, T., & Knuppel, R. A. (2000). Routine second-trimester ultrasonography in the United States: A cost-benefit analysis. Am J Obstet Gynecol, 182(3), 655–660.

    CAS  PubMed  Google Scholar 

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Correspondence to Robert Schweitzer.

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Chaplin, J., Schweitzer, R. & Perkoulidis, S. Experiences of Prenatal Diagnosis of Spina Bifida or Hydrocephalus in Parents Who Decide to Continue with Their Pregnancy. J Genet Counsel 14, 151–162 (2005). https://doi.org/10.1007/s10897-005-0488-9

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