Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Original Article
  • Published:

The health-care experiences of families given the prenatal diagnosis of trisomy 18

Abstract

Objective:

The objective of this study was to examine parent-reported experiences in the health care system after receiving the prenatal diagnosis of trisomy 18 and to identify factors that contribute to satisfaction with care.

Study Design:

Nineteen families who received the diagnosis between 2002 and 2005 were given semistructured telephone interviews. Of the 19 families, 11 continued the pregnancy while the remaining 8 chose induced abortion. Classical content analysis was utilized to identify themes among subject responses.

Result:

We identified several specific aspects of care as key in either being highly satisfied or dissatisfied: expressions of empathy from provider, continuity of care, communication, valuing the fetus and participation in medical decision-making.

Conclusions:

Aspects of care that were identified as reasons for dissatisfaction are potentially modifiable by training, education or team-based approaches. Further studies are necessary to determine how we can improve the quality of services during prenatal diagnosis.

This is a preview of subscription content, access via your institution

Access options

Rent or buy this article

Prices vary by article type

from$1.95

to$39.95

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

References

  1. Baty BJ, Blackburn BL, Carey JC . Natural history of trisomy 18 and trisomy 13: I. Growth, physical assessment, medical histories, survival, and recurrence risk. Am J Med Genet 1994; 49 (2): 175–188.

    Article  CAS  Google Scholar 

  2. Carey JC . Trisomy 18 and trisomy 13 syndromes In: Cassidy SB, Allanson JE (eds). Management of Genetic Syndromes 2005. 2nd edn. John Wiley & Sons Inc.: Hoboken, 555–568.

    Google Scholar 

  3. Carey JC . Introductory comments special section: trisomy 18. Am J Med Genet A 2006; 140A (9): 935–936.

    Article  Google Scholar 

  4. Parker MJ, Budd JL, Draper ES, Young ID . Trisomy 13 and trisomy 18 in a defined population: epidemiological, genetic and prenatal observations. Prenat Diagn 2003; 23 (10): 856–860.

    Article  CAS  Google Scholar 

  5. Kosho T, Nakamura T, Kawame H, Baba A, Tamura M, Fukushima Y . Neonatal management of trisomy 18: clinical details of 24 patients receiving intensive treatment. Am J Med Genet A 2006; 140 (9): 937–944.

    Article  Google Scholar 

  6. Rasmussen SA, Wong LY, Yang Q, May KM, Friedman JM . Population-based analyses of mortality in trisomy 13 and trisomy 18. Pediatrics 2003; 111 (4): 777–784.

    Article  Google Scholar 

  7. Mitchell LM . Women's experiences of unexpected ultrasound findings. J Midwifery Womens Health 2004; 49 (3): 228–234.

    PubMed  Google Scholar 

  8. Statham H, Solomou W, Chitty L . Prenatal diagnosis of fetal abnormality: psychological effects on women in low-risk pregnancies. Baillieres Best Pract Res Clin Obstet Gynaecol 2000; 14 (4): 731–747.

    Article  CAS  Google Scholar 

  9. Badenhorst W, Riches S, Turton P, Hughes P . The psychological effects of stillbirth and neonatal death on fathers: systematic review. J Psychosom Obstet Gynaecol 2006; 27 (4): 245–256.

    Article  Google Scholar 

  10. Scholle SH, Weisman CS, Anderson R, Weitz T, Freund KM, Binko J . Women's satisfaction with primary care: a new measurement effort from the PHS National Centers of Excellence in Women's Health. Womens Health Issues 2000; 10 (1): 1–9.

    Article  CAS  Google Scholar 

  11. Williams B . Patient satisfaction: a valid concept? Soc Sci Med 1994; 38 (4): 509–516.

    Article  CAS  Google Scholar 

  12. Sitzia J, Wood N . Patient satisfaction: a review of issues and concepts. Soc Sci Med 1997; 45 (12): 1829–1843.

    Article  CAS  Google Scholar 

  13. Sandelowski M, Barroso J . The travesty of choosing after positive prenatal diagnosis. J Obstet Gynecol Neonatal Nurs 2005; 34 (3): 307–318.

    Article  Google Scholar 

  14. 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 Couns 2005; 14 (2): 151–162.

    Article  Google Scholar 

  15. Street Jr RL, Krupat E, Bell RA, Kravitz RL, Haidet P . Beliefs about control in the physician–patient relationship: effect on communication in medical encounters. J Gen Intern Med 2003; 18 (8): 609–616.

    Article  Google Scholar 

  16. Redlinger-Grosse K, Bernhardt BA, Berg K, Muenke M, Biesecker BB . The decision to continue: the experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. Am J Med Genet 2002; 112 (4): 369–378.

    Article  Google Scholar 

  17. Skotko B . Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics 2005; 115 (1): 64–77.

    Article  Google Scholar 

  18. Skotko BG . Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers. Am J Obstet Gynecol 2005; 192 (3): 670–677.

    Article  Google Scholar 

  19. Ryan GW, Bernard HR . Data management and analysis methods In: Denzin N, Lincoln YS (eds). Collecting and Interpreting Qualitative Materials. 2nd edn. Sage: London, 2003; 259–309.

    Google Scholar 

  20. Avery KN, Metcalfe C, Nicklin J, Barham, Alderson D, Donovan JL et al. Satisfaction with care: an independent outcome measure in surgical oncology. Ann Surg Oncol 2006; 13 (6): 817–822.

    Article  Google Scholar 

  21. Hirsh AT, Atchison JW, Berger JJ, Waxenberg LB, Lafayette-Lucey A, Bulcourf BB et al. Patient satisfaction with treatment for chronic pain: predictors and relationship to compliance. Clin J Pain 2005; 21 (4): 302–310.

    Article  Google Scholar 

  22. Seecharan GA, Andresen EM, Norris K, Toce SS . Parents' assessment of quality of care and grief following a child's death. Arch Pediatr Adolesc Med 2004; 158 (6): 515–520.

    Article  Google Scholar 

  23. Alkazaleh F, Thomas M, Grebenyuk J, Glaude L, Savage D, Johannesen J et al. What women want: women's preferences of caregiver behavior when prenatal sonography findings are abnormal. Ultrasound Obstet Gynecol 2004; 23 (1): 56–62.

    Article  CAS  Google Scholar 

  24. Leithner K, Assem-Hilger E, Fischer-Kern M, Loffler-Stastka H, Thien R, Ponocny-Seliger E . Prenatal care: the patient's perspective. A qualitative study. Prenat Diagn 2006; 26 (10): 931–937.

    Article  Google Scholar 

  25. Verjaal M, Leschot NJ, Treffers PE . Women's experiences with second trimester prenatal diagnosis. Prenat Diagn 1982; 2 (3): 195–209.

    Article  CAS  Google Scholar 

  26. White-van Mourik MC, Connor JM, Ferguson-Smith MA . The psychosocial sequelae of a second-trimester termination of pregnancy for fetal abnormality. Prenat Diagn 1992; 12 (3): 189–204.

    Article  CAS  Google Scholar 

  27. Frost MH, Arvizu RD, Jayakumar S, Schoonover A, Novotny P, Zahasky K . A multidisciplinary healthcare delivery model for women with breast cancer: patient satisfaction and physical and psychosocial adjustment. Oncol Nurs Forum 1999; 26 (10): 1673–1680.

    CAS  PubMed  Google Scholar 

  28. Brewer CM, Holloway SH, Stone DH, Carothers AD, FitzPatrick DR . Survival in trisomy 13 and trisomy 18 cases ascertained from population based registers. J Med Genet 2002; 39 (9): e54.

    Article  CAS  Google Scholar 

  29. Gattellari M, Butow PN, Tattersall MH . Sharing decisions in cancer care. Soc Sci Med 2001; 52 (12): 1865–1878.

    Article  CAS  Google Scholar 

Download references

Acknowledgements

No financial support was provided to the authors for this research.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to V K Dalton.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Walker, L., Miller, V. & Dalton, V. The health-care experiences of families given the prenatal diagnosis of trisomy 18. J Perinatol 28, 12–19 (2008). https://doi.org/10.1038/sj.jp.7211860

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/sj.jp.7211860

Keywords

This article is cited by

Search

Quick links