Supporting parents' decision making surrounding the anticipated birth of an extremely premature infant

Journal of Perinatal and Neonatal Nursing

Volumn 23, Issue 2, 2009, Pages 159-170

  Kavanaugh, Karen ^a   Moro, Teresa T ^a   Savage, Teresa A ^b   Reyes, Maria ^b   Wydra, Marguerite ^b  

^a and Family Health Science ^*  (Finland)

^b UNIVERSITY OF ILLINOIS AT CHICAGO   (United States)

Author keywords

Case study research; Decision making support; Premature infants

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO HEALTH; DECISION MAKING; EDUCATION; FEMALE; HEALTH PERSONNEL ATTITUDE; HUMAN; INTERPERSONAL COMMUNICATION; MALE; NEEDS ASSESSMENT; NEWBORN; NEWBORN NURSING; NURSE ATTITUDE; NURSING ASSESSMENT; NURSING METHODOLOGY RESEARCH; PARENT; PATIENT CARE; PATIENT EDUCATION; PREGNANCY; PREMATURITY; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; SECOND TRIMESTER PREGNANCY; SOCIAL SUPPORT; STILLBIRTH;

ADULT; ADVANCE CARE PLANNING; ATTITUDE OF HEALTH PERSONNEL; ATTITUDE TO HEALTH; COMMUNICATION; DECISION MAKING; FEMALE; HUMANS; INFANT, NEWBORN; MALE; NEEDS ASSESSMENT; NEONATAL NURSING; NURSE'S ROLE; NURSING ASSESSMENT; NURSING METHODOLOGY RESEARCH; PARENTS; PATIENT EDUCATION AS TOPIC; PREGNANCY; PREGNANCY TRIMESTER, SECOND; PREMATURE BIRTH; QUESTIONNAIRES; SOCIAL SUPPORT; STILLBIRTH;

EID: 68949118007     PISSN: 08932190     EISSN: 15505073     Source Type: Journal    
DOI: 10.1097/JPN.0b013e3181a2cacc     Document Type: Article

References (64)

1. Hack M, Fanaroff AA. Outcomes of children of extremely low birthweight and gestational age in the 1990s. Semin Neonatol. 2000;5(2):89-106.
2. MacDonald H; American Academy of Pediatrics. Committee on Fetus and Newborn. Perinatal care at the threshold of viability. Pediatrics. 2002;110(5):1024-1027.
3. Chan K, Ohlsson A, Synnes A, Lee DS, Chien LY, Lee SK. Survival, morbidity, and resource use of infants of 25 weeks' gestational age or less. Am J Obstet Gynecol. 2001;185(1):220-226.
4. Louis JM, Ehrenberg HM, Collin MF, Mercer BM. Perinatal intervention and neonatal outcomes near the limit of viability. Am J Obstet Gynecol. 2004;191(4):1398-1402.
5. Lucey JF, Rowan CA, Shiono P, et al. Fetal infants: the fate of 4172 infants with birth weights of 401 to 500 grams--the Vermont Oxford Network experience (1996-2000). Pediatrics. 2004;113(6):1559-1566.
6. Meadow W, Lee G, Lin K, Lantos J. Changes in mortality for extremely low birth weight infants in the 1990s: implications for treatment decisions and resource use. Pediatrics. 2004;113(5):1223-1229.
7. Marlow N, Wolke D, Bracewell MA, Samara M. Neurologic and developmental disability at six years of age after extremely preterm birth. N Engl J Med. 2005;352(1):9-19.
8. Swamy GK, Ostbye T, Skjaerven R. Association of preterm birth with long-term survival, reproduction, and next-generation preterm birth. JAMA. 2008;299(12):1429-1436.
9. Hurst I. The legal landscape at the threshold of viability for extremely premature infants: a nursing perspective, part I. J Perinat Neonatal Nurs. 2005;19(2):155-166.
10. Campbell DE, Fleischman AR. Limits of viability: dilemmas, decisions, and decision makers. Am J Perinatol. 2001;18(3):117-128.
11. Annas GJ. Extremely preterm birth and parental authority to refuse treatment--the case of Sidney Miller. N Engl J Med. 2004;351(20):2118-2123.
12. Krug EF III. Law and ethics at the border of viability. J Perinatol. 2006;26(6):321-324.
13. Hurst I. The legal landscape at the threshold of viability for extremely premature infants: a nursing perspective, part II. J Perinat Neonatal Nurs. 2005;19(3):253-262.
14. American College of Obstetrics and Gynecology. ACOG practice bulletin. Perinatal care at the threshold of viability. Number 38, September 2002. American College of Obstetrics and Gynecology. Int J Gynaecol Obstet. 2002;79(2):181-188.
15. Fowler MDM, American Nurses Association. Guide to the Code of Ethics for Nurses: Interpretation and Application. Silver Spring, MD: American Nurses Association; 2008.
16. Association of Women's Health, Obstetric and Neonatal Nurses. Standards for Professional Nursing Practice in the Care of Women and Newborns. 6th ed. Washington, DC: Association of Women's Health, Obstetric and Neonatal Nurses; 2003.
17. National Association of Neonatal Nurses. NICU nurse involvement in ethical decisions (Treatment of critically ill infants). Adv Neonatal Care. 2006;7(5):267-268.
18. Meadow W. 500-gram infants—and 800-pound gorillas—in the delivery room. Pediatrics. 2006;117(6):2276.
19. Pignotti MS, Donzelli G. Perinatal care at the threshold of viability: an international comparison of practical guidelines for the treatment of extremely preterm births. Pediatrics. 2008;121(1):e193-e198.
20. Simeoni U, Vendemmia M, Rizzotti A, Gamerre M. Ethical dilemmas in extreme prematurity: recent answers; more questions. Eur J Obstet Gynecol Reprod Biol. 2004;117(suppl 1):S33-S36.
21. Singh J, Fanaroff J, Andrews B, et al. Resuscitation in the “gray zone” of viability: determining physician preferences and predicting infant outcomes. Pediatrics. 2007;120(3):519-526.
22. Bastek TK, Richardson DK, Zupancic JA, Burns JP. Prenatal consultation practices at the border of viability: a regional survey. Pediatrics. 2005;116(2):407-413.
23. Cook LA, Watchko JF. Decision making for the critically ill neonate near the end of life. J Perinatol. 1996;16(2, pt 1):133-136.
24. Doron MW, Veness-Meehan KA, Margolis LH, Holoman EM, Stiles AD. Delivery room resuscitation decisions for extremely premature infants. Pediatrics. 1998;102(3, pt 1):574-582.
25. Orfali K. Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units. Soc Sci Med. 2004;58(10):2009-2022.
26. Zupancic JA, Kirpalani H, Barrett J, et al. Characterising doctor-parent communication in counselling for impending preterm delivery. Arch Dis Child Fetal Neonatal Ed. 2002;87(2):F113-F117.
27. Kavanaugh K, Savage T, Kilpatrick S, Kimura R, Hershberger P. Life support decisions for extremely premature infants: report of a pilot study. J Pediatr Nurs. 2005;20(5):347-359.
28. Keenan HT, Doron MW, Seyda BA. Comparison of mothers' and counselors' perceptions of predelivery counseling for extremely premature infants. Pediatrics. 2005;116(1):104-111.
29. Pinch WJ, Spielman ML. The parents' perspective: ethical decision-making in neonatal intensive care. J Adv Nurs. 1990;15(6):712-719.
30. Kavanaugh K, Hershberger P. Perinatal loss in low-income African American parents. J Obstet Gynecol Neonatal Nurs. 2005;34(5):595-605.
31. Wocial LD. Life support decisions involving imperiled infants. J Perinat Neonatal Nurs. 2000;14(2):73-86.
32. Harrison MJ, Kushner KE, Benzies K, Rempel G, Kimak C. Women's satisfaction with their involvement in health care decisions during a high-risk pregnancy. Birth. 2003;30(2):109-115.
33. McHaffie HE, Laing IA, Parker M, McMillan J. Deciding for imperilled newborns: medical authority or parental autonomy? J Med Ethics. 2001;27(2):104-109.
34. McHaffie HE, Lyon AJ, Hume R. Deciding on treatment limitation for neonates: the parents' perspective. Eur J Pediatr. 2001;160(6):339-344.
35. Pector EA. Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death. J Perinatol. 2004;24(1):4-10.
36. Brinchmann B, Forde R, Nortvedt P. What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants. Nurs Ethics. 2002;9(4):388-404.
37. Martinez AM, Partridge JC, Yu V, et al. Physician counselling practices and decision-making for extremely preterm infants in the Pacific Rim. J Paediatr Child Health. 2005;41(4):209-214.
38. Partridge JC, Freeman H, Weiss E, Martinez AM. Delivery room resuscitation decisions for extremely low birthweight infants in California. J Perinatol. 2001;21(1):27-33.
39. O'Connor AM, Jacobsen MJ, Stacey D. An evidence-based approach to managing women's decisional conflict. J Obstet Gynecol Neonatal Nurs. 2002;31(5):570-581.
40. O'Connor AM, Tugwell P, Wells GA, et al. A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Couns. 1998;33(3):267-279.
41. Ayres L, Kavanaugh K, Knafl KA. Within-case and across-case approaches to qualitative data analysis. Qual Health Res. 2003;13(6):871-883.
42. Kavanaugh K, Moro TT, Savage T, Mehendale R. Enacting a theory of caring to recruit and retain vulnerable participants for sensitive research. Res Nurs Health. 2006;29(3):244-252.
43. Lee SE, Romero R, Park CW, Jun JK, Yoon BH. The frequency and significance of intraamniotic inflammation in patients with cervical insufficiency. Am J Obstet Gynecol. 2008;198(6):633.e1-633.e8.
44. Debby A, Sadan O, Glezerman M, Golan A. Favorable outcome following emergency second trimester cerclage. Int J Gynaecol Obstet. 2007;96(1):16-19.
45. McElrath TF, Norwitz ER, Lieberman ES, Heffner LJ. Management of cervical cerclage and preterm premature rupture of the membranes: should the stitch be removed? Am J Obstet Gynecol. 2000;183(4):840-846.
46. Price S, Lake M, Breen G, Carson G, Quinn C, O'Connor T. The spiritual experience of high-risk pregnancy. J Obstet Gynecol Neonatal Nurs. 2007;36(1):63-70.
47. Sittner BJ, DeFrain J, Hudson DB. Effects of high-risk pregnancies on families. MCN Am J Matern Child Nurs. 2005;30(2):121-126.
48. Martin-Arafeh JM, Watson CL, Baird SM. Promoting family-centered care in high risk pregnancy. J Perinat Neonatal Nurs. 1999;13(1):27-42.
49. Richter MS, Parkes C, Chaw-Kant J. Listening to the voices of hospitalized high-risk antepartum patient. J Obstet Gynecol Neonatal Nurs. 2007;36(4):313-318.
50. MacKinnon K. Living with the threat of preterm labor: women's work of keeping the baby in. J Obstet Gynecol Neonatal Nurs. 2006;35(6):700-708.
51. Maloni JA, Kutil RM. Antepartum support group for women hospitalized on bed rest. MCN Am J Matern Child Nurs. 2000;25(4):204-210.
52. Werner-Lin A, Moro T. Unacknowledged and stigmatized losses. In: Walsh F, McGoldrick M, eds. Living Beyond Loss: Death in the Family. 2nd ed. New York: WW Norton; 2003:247-271.
53. Buus-Frank ME. Sometimes a time to be born is also a time to die. Adv Neonatal Care. 2006;6(1):1-3.
54. Glazer JP, Hilden JM, Poltorak DY. Pediatric palliative medicine. Child Adolesc Psychiatr Clin N Am. 2006;15(3):xvii-xx.
55. Rousch A, Sullivan P, Cooper R, McBride JW. Perinatal hospice. Newborn Infant Nurs Rev. 2007;7(4):216-221.
56. Griffin T, Kavanaugh K, Soto CF, 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.
57. Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonatal Nurs. 2006;20(1):113-116.
58. Munson D, Leuthner SR. Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin N Am. 2007;54:787-798.
59. Romesberg TL. Building a case for neonatal palliative care. Neonatal Netw. 2007;26(2):111-115.
60. Bennett SM, Litz BT, Lee BS, Maguen S. The scope and impact of perinatal loss: current status and future directions. Prof Psychol Res Pr. 2005;36(2):180-187.
61. Gold KJ. Navigating care after a baby dies: a systematic review of parent experiences with health providers. J Perinatol. 2007;27(4):230-237.
62. Kavanaugh K, Moro T. Supporting parents after stillbirth or newborn death: there is much that nurses can do. Am J Nurs. 2006;106(9):74-79.
63. Kobler K, Limbo R, Kavanaugh K. Meaningful moments. MCN Am J Matern Child Nurs. 2007;32(5):288-295.
64. Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonatal Nurs. 2006;20(1):113-116.