Skip to main content
Archives of Disease in Childhood. Fetal and Neonatal Edition logoLink to Archives of Disease in Childhood. Fetal and Neonatal Edition
. 2002 Sep;87(2):F113–F117. doi: 10.1136/fn.87.2.F113

Characterising doctor-parent communication in counselling for impending preterm delivery

J Zupancic, H Kirpalani, J Barrett, S Stewart, A Gafni, D Streiner, M Beecroft, P Smith
PMCID: PMC1721446  PMID: 12193517

Abstract

Objective: To examine the counselling of women admitted to hospital in preterm labour. Such women and their partners are often asked to participate in difficult decisions including mode of delivery, fetal monitoring, and resuscitation.

Study design: Questionnaire based descriptive study.

Study setting: A tertiary level perinatal referral centre.

Patients: Forty nine women in preterm labour at 22–30 weeks gestation, admitted in two separate periods between March 1997 and May 1999.

Intervention and outcome measure: Within 24 hours of counselling, parents were asked to complete a questionnaire assessing recall of the management plan, desire for involvement in decision making, anxiety, and feelings of control over their health. A parallel questionnaire was completed by the clinicians.

Results: Parents and clinicians on recall agreed well about obstetric issues but poorly about neonatal issues. Overall 27% of parents felt: "I would prefer to have the doctors advise me, rather than asking me to decide". In 79% of cases, clinicians believed parents preferred advice rather than to make decisions, but in 45% of these, they misidentified those who wished to make their decisions. Anxiety levels for one third of the mothers were high, and associated with poorer concordance of recall between parents and clinicians.

Conclusions: Serious deficiencies exist in parent-clinician encounters during extremely preterm labour. Concordance between parents and clinicians is poor and anxiety very high. A quarter of parents appear to prefer to relinquish decision making autonomy, but clinicians cannot correctly identify this subgroup. Standardised counselling in the perinatal period, using formal decision aids, should be investigated.

Full Text

The Full Text of this article is available as a PDF (108.8 KB).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Antrobus J. H. Anxiety and informed consent. Does anxiety influence consent for inclusion in a study of anxiolytic premedication? Anaesthesia. 1988 Apr;43(4):267–269. [PubMed] [Google Scholar]
  2. Cassileth B. R., Zupkis R. V., Sutton-Smith K., March V. Information and participation preferences among cancer patients. Ann Intern Med. 1980 Jun;92(6):832–836. doi: 10.7326/0003-4819-92-6-832. [DOI] [PubMed] [Google Scholar]
  3. Charles C., Gafni A., Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. 1997 Mar;44(5):681–692. doi: 10.1016/s0277-9536(96)00221-3. [DOI] [PubMed] [Google Scholar]
  4. Charles C., Whelan T., Gafni A. What do we mean by partnership in making decisions about treatment? BMJ. 1999 Sep 18;319(7212):780–782. doi: 10.1136/bmj.319.7212.780. [DOI] [PMC free article] [PubMed] [Google Scholar]
  5. Cuttini M., Rebagliato M., Bortoli P., Hansen G., de Leeuw R., Lenoir S., Persson J., Reid M., Schroell M., de Vonderweid U. Parental visiting, communication, and participation in ethical decisions: a comparison of neonatal unit policies in Europe. Arch Dis Child Fetal Neonatal Ed. 1999 Sep;81(2):F84–F91. doi: 10.1136/fn.81.2.f84. [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. De Leeuw R., Cuttini M., Nadai M., Berbik I., Hansen G., Kucinskas A., Lenoir S., Levin A., Persson J., Rebagliato M. Treatment choices for extremely preterm infants: an international perspective. J Pediatr. 2000 Nov;137(5):608–616. doi: 10.1067/mpd.2000.109144. [DOI] [PubMed] [Google Scholar]
  7. Goldenberg R. L., Nelson K. G., Dyer R. L., Wayne J. The variability of viability: the effect of physicians' perceptions of viability on the survival of very low--birth weight infants. Am J Obstet Gynecol. 1982 Jul 15;143(6):678–684. doi: 10.1016/0002-9378(82)90114-4. [DOI] [PubMed] [Google Scholar]
  8. Gramlich E. P., Waitzfelder B. E. Interactive video assists in clinical decision making. Methods Inf Med. 1998 Jun;37(2):201–205. [PubMed] [Google Scholar]
  9. Harrison H. The principles for family-centered neonatal care. Pediatrics. 1993 Nov;92(5):643–650. [PubMed] [Google Scholar]
  10. Harth S. C., Johnstone R. R., Thong Y. H. The psychological profile of parents who volunteer their children for clinical research: a controlled study. J Med Ethics. 1992 Jun;18(2):86–93. doi: 10.1136/jme.18.2.86. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Harth S. C., Thong Y. H. Sociodemographic and motivational characteristics of parents who volunteer their children for clinical research: a controlled study. BMJ. 1990 May 26;300(6736):1372–1375. doi: 10.1136/bmj.300.6736.1372. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Haywood J. L., Goldenberg R. L., Bronstein J., Nelson K. G., Carlo W. A. Comparison of perceived and actual rates of survival and freedom from handicap in premature infants. Am J Obstet Gynecol. 1994 Aug;171(2):432–439. doi: 10.1016/0002-9378(94)90279-8. [DOI] [PubMed] [Google Scholar]
  13. Hughes T. E., Larson L. N. Patient involvement in health care. A procedural justice viewpoint. Med Care. 1991 Mar;29(3):297–303. doi: 10.1097/00005650-199103000-00011. [DOI] [PubMed] [Google Scholar]
  14. Koh T. H., Casey A., Harrison H. Use of an outcome by gestation table for extremely premature babies: a cross-sectional survey of the views of parents, neonatal nurses and perinatologists. J Perinatol. 2000 Dec;20(8 Pt 1):504–508. doi: 10.1038/sj.jp.7200459. [DOI] [PubMed] [Google Scholar]
  15. Koh T. H., Harrison H., Casey A. Prediction of survival for preterm births. Survival table was not easy to understand. BMJ. 2000 Mar 4;320(7235):647–647. [PMC free article] [PubMed] [Google Scholar]
  16. Koh T. H., Harrison H., Morley C. Gestation versus outcome table for parents of extremely premature infants. J Perinatol. 1999 Sep;19(6 Pt 1):452–453. doi: 10.1038/sj.jp.7200208. [DOI] [PubMed] [Google Scholar]
  17. Lee S. K., Penner P. L., Cox M. Comparison of the attitudes of health care professionals and parents toward active treatment of very low birth weight infants. Pediatrics. 1991 Jul;88(1):110–114. [PubMed] [Google Scholar]
  18. Levine M. N., Gafni A., Markham B., MacFarlane D. A bedside decision instrument to elicit a patient's preference concerning adjuvant chemotherapy for breast cancer. Ann Intern Med. 1992 Jul 1;117(1):53–58. doi: 10.7326/0003-4819-117-1-53. [DOI] [PubMed] [Google Scholar]
  19. Molenaar S., Sprangers M. A., Postma-Schuit F. C., Rutgers E. J., Noorlander J., Hendriks J., de Haes H. C. Feasibility and effects of decision aids. Med Decis Making. 2000 Jan-Mar;20(1):112–127. doi: 10.1177/0272989X0002000114. [DOI] [PubMed] [Google Scholar]
  20. O'Connor A. M., Tugwell P., Wells G. A., Elmslie T., Jolly E., Hollingworth G., McPherson R., Drake E., Hopman W., Mackenzie T. Randomized trial of a portable, self-administered decision aid for postmenopausal women considering long-term preventive hormone therapy. Med Decis Making. 1998 Jul-Sep;18(3):295–303. doi: 10.1177/0272989X9801800307. [DOI] [PubMed] [Google Scholar]
  21. Ong L. M., de Haes J. C., Hoos A. M., Lammes F. B. Doctor-patient communication: a review of the literature. Soc Sci Med. 1995 Apr;40(7):903–918. doi: 10.1016/0277-9536(94)00155-m. [DOI] [PubMed] [Google Scholar]
  22. Perlman N. B., Freedman J. L., Abramovitch R., Whyte H., Kirpalani H., Perlman M. Informational needs of parents of sick neonates. Pediatrics. 1991 Sep;88(3):512–518. [PubMed] [Google Scholar]
  23. Roling G. T., Pressgrove L. W., Keeffe E. B., Raffin S. B. An appraisal of patients' reactions to "informed consent" for peroral endoscopy. Gastrointest Endosc. 1977 Nov;24(2):69–70. doi: 10.1016/s0016-5107(77)73453-4. [DOI] [PubMed] [Google Scholar]
  24. Ruccione K., Kramer R. F., Moore I. K., Perin G. Informed consent for treatment of childhood cancer: factors affecting parents' decision making. J Pediatr Oncol Nurs. 1991 Jul;8(3):112–121. doi: 10.1177/104345429100800304. [DOI] [PubMed] [Google Scholar]
  25. Sanders M. R., Donohue P. K., Oberdorf M. A., Rosenkrantz T. S., Allen M. C. Perceptions of the limit of viability: neonatologists' attitudes toward extremely preterm infants. J Perinatol. 1995 Nov-Dec;15(6):494–502. [PubMed] [Google Scholar]
  26. Siminoff L. A., Fetting J. H., Abeloff M. D. Doctor-patient communication about breast cancer adjuvant therapy. J Clin Oncol. 1989 Sep;7(9):1192–1200. doi: 10.1200/JCO.1989.7.9.1192. [DOI] [PubMed] [Google Scholar]
  27. Swan H. D., Borshoff D. C. Informed consent--recall of risk information following epidural analgesia in labour. Anaesth Intensive Care. 1994 Apr;22(2):139–141. doi: 10.1177/0310057X9402200202. [DOI] [PubMed] [Google Scholar]
  28. Wilson A. L., Wellman L. R., Fenton L. J., Witzke D. B. What physicians know about the prognosis of preterm newborns. Am J Dis Child. 1983 Jun;137(6):551–554. doi: 10.1001/archpedi.1983.02140320027004. [DOI] [PubMed] [Google Scholar]
  29. de Garis C., Kuhse H., Singer P., Yu V. Y. Attitudes of Australian neonatal paediatricians to the treatment of extremely preterm infants. Aust Paediatr J. 1987 Aug;23(4):223–226. doi: 10.1111/j.1440-1754.1987.tb00254.x. [DOI] [PubMed] [Google Scholar]

Articles from Archives of Disease in Childhood Fetal and Neonatal Edition are provided here courtesy of BMJ Publishing Group

RESOURCES