More than information: A qualitative study of parents' perspectives on neonatal intensive care at the extremes of prematurity

Advances in Neonatal Care

Volumn 12, Issue 5, 2012, Pages 303-309

  Pepper, Dawn ^a   Rempel, Gwen ^b   Austin, Wendy ^b   Ceci, Christine ^c   Hendson, Leonora ^b  

^a ALBERTA HEALTH SERVICES   (Canada)

^b UNIVERSITY OF ALBERTA   (Canada)

^c GLENROSE REHABILITATION HOSPITAL   (Canada)

Author keywords

Decision making; Infant; Intensive care units; Interpretive description; Life changing events; Neonatal; Parental perceptions; Parents; Premature; Qualitative research

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; ARTICLE; CANADA; COMMUNICATION DISORDER; CONSUMER; CULTURAL COMPETENCE; DECISION MAKING; ETHICS; EVALUATION; FEMALE; HUMAN; HUMAN RELATION; LIFE EVENT; MALE; METHODOLOGY; NEWBORN; NEWBORN INTENSIVE CARE; ORGANIZATION AND MANAGEMENT; PARENT; PERCEPTION; PREMATURITY; PSYCHOLOGICAL ASPECT; STANDARD;

ADAPTATION, PSYCHOLOGICAL; ADULT; CANADA; COMMUNICATION BARRIERS; CONSUMER SATISFACTION; CULTURAL COMPETENCY; DECISION MAKING; FEMALE; HUMANS; INFANT, EXTREMELY PREMATURE; INFANT, NEWBORN; INTENSIVE CARE UNITS, NEONATAL; INTENSIVE CARE, NEONATAL; LIFE CHANGE EVENTS; MALE; PARENTS; PROFESSIONAL-FAMILY RELATIONS; SOCIAL PERCEPTION;

EID: 84868611914     PISSN: 15360903     EISSN: None     Source Type: Journal    
DOI: 10.1097/ANC.0b013e318265b3d5     Document Type: Article

References (29)

1. Leuthner SR. Decisions regarding resuscitation of the extremely premature infant and models of best interest. J Perinatol. 2001;21(3):193-198. (Pubitemid 32798682)
2. Marlow N, Wolker 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.
3. Marlow N. Neurocognitive outcome after very preterm birth. Arch Dis Child Fetal Neonat ed. 2004;89(3):F224-F228. (Pubitemid 38570151)
4. Janvier A, Leblanc I, Barrington KJ. The best-interest standard is not applied for neonatal resuscitation decisions. Pediatrics. 2008;121(5):963-969.
5. Pinch WJ, Spielman ML. The parents' perspective: ethical decision-making in neonatal intensive care. J Adv Nurs. 1990;15(6):712-719.
6. Pinch WJ, Spielman ML. Parental perceptions of ethical issues post-NICU discharge including commentary by Harrison MJ with author response. West J Nurs Res. 1993;15(4):422-440.
7. Pinch W, Spielman ML. Ethics in the neonatal intensive care unit: parental perceptions at four years post discharge. ANS Adv Nurs Sci. 1996;19(1):72-85. (Pubitemid 126479568)
8. Streiner DL, Saigal S, Burrows E, Stoskopf B, Rosenbaum P. Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics. 2001;108(1):152-157. (Pubitemid 32592019)
9. Wocial LD. Life support decisions involving imperiled infants. J Perinat Neonat Nurs. 2000;14(2):73-86.
10. American Academy of Pediatrics Committee on Fetus and Newborn. Noninitiation or withdrawal of intensive care for high risk newborns. Pediatrics. 2007;119(2):401-403.
11. Cleveland LM. Parenting in the neonatal intensive care unit. J Obstet Gynecol Neonatal Nurs. 2008;37(6):666-691.
12. Brinchmann BS, 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.
13. Morse JM, Field P. Qualitative Research Methods for Health Professionals. 2nd ed. Thousand Oaks, CA: Sage; 1995.
14. Thorne S. Interpretive Description. Walnut Creek, CA: Left Coast Press Inc; 2008.
15. Thorne S, Reimer Kirkham S, O'Flynn-Magee K. The analytic challenge in interpretive description. Int J Qual Meth. 2004;3:1-21.
16. Thorne S, Con A, McGuinness L, McPherson G, Harris SR. Health care communication issues in multiple sclerosis: an interpretive description. Qual Health Res. 2004;14(1):5-22. (Pubitemid 44534598)
17. Thorne S, Kirkham SR, MacDonald-Emes J. Focus on qualitative methods. Interpretive description: a noncategorical qualitative alternative for developing nursing knowledge. Res Nurs Health. 1997;20(2):169-177. (Pubitemid 127453583)
18. Koch T, Harrington A. Reconceptualizing rigour: the case for reflexiv-ity. J Adv Nurs. 1998;28(4):882-890.
19. Morse JM, Barrett M, Mayan M, Olsen K, Spiers J. Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Meth. 2002;1(2):13-22.
20. Janvier A, Lantos J, Deschenes M, Couture E, Nadeau S, Barrington KJ. Caregivers attitudes for very premature infants: what if they knew? Acta Paediatr. 2008;97(3):276-279. (Pubitemid 351514165)
21. Lutz KF, Anderson LS, Riesch SK, Pridham KA, Becker PT. Furthering the understanding of parent-child relationships: a nursing scholarship review series. Part 2: Grasping the early parenting experience---The insider view. J Spec Pediatr Nurs. 2009;14(4):262-283.
22. Payot A, Gendron S, Lefebvre F, Doucet H. Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision? Soc Sci Med. 2007;64(7):1487-1500. (Pubitemid 46349385)
23. Charchuk M, Simpson C. Hope, disclosure, and control in the neonatal intensive care unit. Health Commun. 2005;17(2):191-203. (Pubitemid 40463325)
24. Mowdy R. Spirituality and health care. In: Catalano JT, ed. Nursing Now: Today's Issues, Tomorrows Trends. 6th ed. Philadelphia, PA: FA Davis Company; 2012:411-429.
25. 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.
26. Alderson P, Hawthorne J, Killen M. Parents' experiences of sharing neonatal information and decisions: consent, cost and risk. Soc Sci Med. 2006;62(6):1319-1329. (Pubitemid 43197818)
27. Heermann JA, Wilson ME, Wilhelm PA. Mothers in the NICU: outsider to partner. Pediatr Nurs. 2005;31(3):176.
28. Ineson E, Lyons A, Branston C. Cross cultural change, adjustment and culture shock: UK to USA. Tourism. 2006;54:355-365.
29. Lemermeyer G. Hearing the Call of Parents: Relational Ethics in the NICU [master of nursing thesis]. Edmonton, Alberta, Canada: University of Alberta; 2007.