Prenatal consultation with a neonatologist for congenital anomalies: Parental perceptions

Pediatrics

Volumn 124, Issue 4, 2009, Pages

  Miquel Verges, Franscesca ^a   Woods, S Lee ^b   Aucott, Susan W ^a   Boss, Renee D ^a   Sulpar, Leslie J ^a   Donohue, Pamela K ^a,c  

^a JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b MARYLAND DEPARTMENT OF HEALTH AND MENTAL HYGIENE   (United States)

^c JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

Author keywords

Communication; Congenital anomaly; Neonatology; Prenatal consultation; Prenatal diagnosis

Indexed keywords

ADULT; ARTICLE; CONGENITAL MALFORMATION; CONSULTATION; CONTROLLED STUDY; HEALTH CARE PERSONNEL; HUMAN; MALE; NEWBORN INTENSIVE CARE; PARENTAL ATTITUDE; PATIENT COUNSELING; PATIENT REFERRAL; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; PROGNOSIS; SEMI STRUCTURED INTERVIEW;

ADOLESCENT; ADULT; CONGENITAL ABNORMALITIES; DECISION MAKING; FEMALE; GENETIC COUNSELING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INTENSIVE CARE UNITS, NEONATAL; INTERVIEWS AS TOPIC; MOTHER-CHILD RELATIONS; NEONATOLOGY; PHYSICIAN-PATIENT RELATIONS; PREGNANCY; PRENATAL DIAGNOSIS; PROFESSIONAL-FAMILY RELATIONS; QUALITY OF HEALTH CARE; REFERRAL AND CONSULTATION; TRUTH DISCLOSURE; YOUNG ADULT;

EID: 70349728531     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2008-2865     Document Type: Article

References (37)

1. Martin JA, Kung HS, Mathews TJ, et al. Annual summary of vital statistics: 2006. Pediatrics. 2008;121(4):788-801
2. Menahem S, Grimwade J. Prenatal counseling: helping couples make decisions following the diagnosis of severe heart disease. Early Hum Dev. 2005;81(7):601-607 (Pubitemid 40961569)
3. Howard ED. Family-centered care in the context of fetal abnormality. J Perinat Neonatal Nurs. 2006;20(3):237-242
4. Sandelowski M, Barroso J. The travesty of choosing after positive prenatal diagnosis. J Obstet Gynecol Neonatal Nurs. 2005;34(3):307-318 (Pubitemid 40894661)
5. Chitty LS, Barnes CA, Berry C. For debate: continuing with pregnancy after a diagnosis of lethal abnormality - management. BMJ. 1996;313(7055):478- 480
6. Maijala H, Astedt-Kurki P, Paavilainen E, Väisänen L. Interaction between caregivers and families expecting a malformed child. J Adv Nurs. 2003;42(1):37-46 (Pubitemid 37255934)
7. 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
8. Menahem S, Grimwade J. Counseling strategies in the prenatal diagnosis of major heart abnormality. Heart Lung Circ. 2004;13(3):261-265 (Pubitemid 39317648)
9. Lalor J, Begley C. Fetal anomaly screening: what do women want to know? J Adv Nurs. 2006;55(1): 11-19 (Pubitemid 43846425)
10. Kemp J, Davenport M, Pernet A. Antenatally diagnosed surgical anomalies: the psychological effect of parental antenatal counseling. J Pediatr Surg. 1998;33(9):1376-1379 (Pubitemid 28443113)
11. 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 (Pubitemid 40922245)
12. Hunfeld JAM, Leurs A, De Jong M, et al. Prenatal consultation after a fetal anomaly scan: videotaped exploration of physician's attitude and patient's satisfaction. Prenat Diagn. 1999;19(11): 1043-1047
13. Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago, IL: Aldine; 1967
14. Glaser BG. Basics of Grounded Theory Analysis: Emergence vs Forcing. Mill Valley, CA: Sociology Press; 1992
15. Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59-82
16. Creswell J. Qualitative Inquiry and Research Design: Choosing Among 5 Traditions. Thousand Oaks, CA: Sage Publications; 1998
17. Miles M. Qualitative Data Analysis: An Expanded Sourcebook. 2nd ed. Thousand Oaks, CA: Sage Publications; 1994
18. Bijma HH, Schoonderwaldt EM, van der Heide A, Wildschut HIJ, van der Maas PJ, Wladimiroff JW. Ultrasound diagnosis of fetal anomalies: an analysis of perinatal management of 318 consecutive pregnancies in a multidisciplinary setting. Prenat Diagn. 2004;24(11):890-895
19. Halamek LP. The advantages of prenatal consultation by a neonatologist. J Perinatol. 2001;21(2): 116-120
20. Griffin T, Kavanaugh K, Fraga Soto C, White M. Parental evaluation of a tour of the neonatal intensive care unit during a high-risk pregnancy. J Obstet Gynecol Neonatal Nurs. 1997;26(1): 59-65
21. 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 (Pubitemid 44671044)
22. Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet. 2004; 363(9405):312-319 (Pubitemid 38142417)
23. Hedrick J. The lived experience of pregnancy while carrying a child with a known, nonlethal congenital abnormality. J Obstet Gynecol Neonatal Nurs. 2004;34(6):732-740 (Pubitemid 41694474)
24. Lalor JG, Begley CM, Galavan E. A grounded theory study of information preference and coping styles following antenatal diagnosis of foetal abnormality. J Adv Nurs. 2008;64(2):185-194
25. Hansen AR, Madsen JR. Antenatal neurosurgical counseling: approach to the unborn patient. Pediatr Clin North Am. 2004;51(2):491-505
26. Arockiasamy V, Holsti L, Albersheim S. Fathers' experiences in the neonatal intensive care unit: a search for control. Pediatrics. 2008;121(2). Available at: www.pediatrics.org/cgi/content/full/121/ 2/e215 (Pubitemid 351198425)
27. Porter KB, Wagner PC, Cabaniss ML. Fetal board: a multidisciplinary approach to management of the abnormal fetus. Obstet Gynecol. 1988;72(2):275-1228
28. Aite L, Trucchi A, Nahom A, Zaccara A, La Sala E, Bagolan B. Antenatal diagnosis of surgically correctable anomalies: effects of repeated consultations on parental anxiety. J Perinatol. 2003; 23(8):652-654 (Pubitemid 37541006)
29. Boss RD, Hutton N, Sulpar LJ, West AM, Donohue PK. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics. 2008;122(3):583-589
30. Clayton JM, Butow PN, Tattersall MH. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end of life issues. Cancer. 2005;103(9): 1957-1964
31. Evans WG, Tulsky JA, Back AL, Arnold RM. Communication at times of transitions: how to help patients cope with loss and re-define hope. Cancer J. 2006;12(5):417-424
32. Fox S, Platt FW, Kemp White M, Hulac P. Talking about the unthinkable: perinatal/neonatal communication issues and procedures. Clin Perinatol. 2005;32(1):157-170 (Pubitemid 40365010)
33. Alkazaleh F, Thomas M, Grebenyuk 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 (Pubitemid 38122101)
34. Yan T, Wen SW, Walker MC, Beduz MA, Kim PC. Women's satisfaction with the current state of prenatal care for pregnancies complicated by fetal anomalies: a survey of five academic perinatal units in Ontario. J Obstet Gynaecol Can. 2007;29(4):308-314
35. Lalor JG, Devane D, Begley CM. Unexpected diagnosis of fetal abnormality: women's encounters with caregivers. Birth. 2007;34(1):80-88 (Pubitemid 46271159)
36. Sharp MC, Strauss RP, Lorch SC. Communicating medical bad news: parent's experiences and preferences. J Pediatr. 1992;121(4):539-546
37. Novick G. Is there a bias against telephone interviews in qualitative research? Res Nurs Health. 2008;31(4):391-398