Parental decision-making for medically complex infants and children: An integrated literature review

International Journal of Nursing Studies

Volumn 51, Issue 9, 2014, Pages 1289-1304

  Allen, Kimberly A ^a  

^a UNIVERSITY OF WASHINGTON   (United States)

Author keywords

Decision making; Infant; Integrated review; Neonate; Parent

Indexed keywords

CONGENITAL DISORDER; DECISION MAKING; HUMAN; LONG TERM CARE; NEWBORN; PARENT; PSYCHOLOGY;

CONGENITAL ABNORMALITIES; DECISION MAKING; HUMANS; INFANT, NEWBORN; LIFE SUPPORT CARE; PARENTS;

EID: 84905265689     PISSN: 00207489     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ijnurstu.2014.02.003     Document Type: Review

References (63)

1. Ahmed S., Atkin K., Hewison J., Green J. The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major. Prenatal Diagnosis 2006, 26(9):801-809.
2. Ahmed S., Hewison J., Green J.M., Cuckle H.S., Hirst J., Thornton J.G. Decisions about testing and termination of pregnancy for different fetal conditions: a qualitative study of European White and Pakistani mothers of affected children. Journal of Genetic Counseling 2008, 17(6):560-572.
3. Balkan M., Kalkanli S., Akbas H., Yalinkaya A., Alp M., Budak T. Parental decisions regarding a prenatally detected fetal chromosomal abnormality and the impact of genetic counseling: an analysis of 38 cases with aneuploidy in Southeast Turkey. Journal of Genetic Counseling 2010, 19(3):241-246.
4. Bell E.F. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics 2007, 119(2):401-403.
5. Bluebond-Langner M., Belasco J.B., Goldman A., Belasco C. Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed. Journal of Clinical Oncology 2007, 25(17):2414-2419.
6. Boss R.D., Hutton N., Sulpar L.J., West A.M., Donohue P.K. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 2008, 122(3):583-589.
7. Brehaut J.C., O'Connor A.M., Wood T.J., Hack T.F., Siminoff L., Gordon E., Feldman-Stewart D. Validation of a decision regret scale. Medical Decision Making 2003, 23(4):281-292.
8. Brinchmann B.S., Rorde R., Nortvedt P. What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants. Nursing Ethics 2002, 9(4):388-404.
9. Caeymaex L., Jousselme C., Vasilescu C., Danan C., Falissard B., Bourrat M.M., Garel M., Speranza M. Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Archives of Disease in Childhood, Fetal and Neonatal Edition 2013, 98(1):F26-F31.
10. Carnevale F.A., Benedetti M., Bonaldi A., Bravi E., Trabucco G., Biban P. Understanding the private worlds of physicians, nurses, and parents: a study of life-sustaining treatment decisions in Italian paediatric critical care. Journal of the Child Health Care 2011, 15(4):334-349.
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. Journal of Genetic Counseling 2005, 14(2):151-162.
12. Chenni N., Lacroze V., Pouet C., Fraisse A., Kreitmann B., Gamerre M., Boubli L., D'Ercole C. Fetal heart disease and interruption of pregnancy: factors influencing the parental decision-making process. Prenatal Diagnosis 2012, 32(2):168-172.
13. Coulter A., Collins A. Making Shared Decision-Making a Reality: No Decision About Me, Without Me 2011, The King's Fund, London.
14. Culbert A., Davis D.J. Parental preferences for neonatal resuscitation research consent: a pilot study. Journal of Medical Ethics 2005, 31(12):721-726.
15. Devictor D.J., Latour J.M. Forgoing life support: how the decision is made in European pediatric intensive care units. Intensive Care Medicine 2011, 37(11):1881-1887.
16. Dussel V., Kreicbergs U., Hilden J.M., Watterson J., Moore C., Turner B.G., Weeks J.C., Wolfe J. Looking beyond where children die: determinants and effects of planning a child's location of death. Journal of Pain and Symptom Management 2009, 37(1):33-43.
17. Einarsdottir J. Emotional experts: parents' views on end-of-life decisions for preterm infants in Iceland. Medical Anthropology Quarterly 2009, 23(1):34-50.
18. Ellinger M.K., Rempel G.R. Parental decision making regarding treatment of hypoplastic left heart syndrome. Advances in Neonatal Care 2010, 10(6):316-322. quiz323-314.
19. Elwyn G., Laitner S., Coulter A., Walker E., Watson P., Thomson R. Implementing shared decision making in the NHS. British Medical Journal 2010, 341:c5146.
20. Feudtner C., Carroll K.W., Hexem K.R., Silberman J., Kang T.I., Kazak A.E. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study. Archives of Pediatrics and Adolescent Medicine 2010, 164(9):831-839.
21. Giannini A., Messeri A., Aprile A., Casalone C., Jankovic M., Scarani R., Viafora C. End-of-life decisions in pediatric intensive care. Recommendations of the Italian Society of Neonatal and Pediatric Anesthesia and Intensive Care (SARNePI). Paediatric Anaesthesia 2008, 18(11):1089-1095.
22. Grobman W.A., Kavanaugh K., Moro T., DeRegnier R.A., Savage T. Providing advice to parents for women at acutely high risk of periviable delivery. Obstetrics and Gynecology 2010, 115(5):904-909.
23. Harper M., O'Connor R.E., O'Carroll R.C. Increased mortality in parents bereaved in the first year of their child's life. BMJ Supportive and Palliative Care 2011, 1:306-309.
24. Kavanaugh K., Moro T.T., Savage T.A. How nurses assist parents regarding life support decisions for extremely premature infants. Journal of Obstetric, Gynecologic and Neonatal Nursing 2010, 39(2):147-158.
25. Kilicarslan-Toruner E., Akgun-Citak E. Information-seeking behaviours and decision-making process of parents of children with cancer. European Journal of Oncology Nursing 2013, 17(2):176-183.
26. Kon A.A. The shared decision-making continuum. Journal of the American Medical Association 2010, 304(8):903-904.
27. Korenromp M.J., Christiaens G.C., van den Bout J., Mulder E.J., Hunfeld J.A., Bilardo C.M., Offermans J.P., Visser G.H. Long-term psychological consequences of pregnancy termination for fetal abnormality: a cross-sectional study. Prenatal Diagnosis 2005, 25(3):253-260.
28. Lam H.S., Wong S.P., Liu F.Y., Wong H.L., Fok T.F., Ng P.C. Attitudes toward neonatal intensive care treatment of preterm infants with a high risk of developing long-term disabilities. Pediatrics 2009, 123(6):1501-1508.
29. Lan S.F., Mu P.F., Hsieh K.S. Maternal experiences making a decision about heart surgery for their young children with congenital heart disease. Journal of Clinical Nursing 2007, 16(12):2323-2330.
30. Legare F., Witteman H.O. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Affairs 2013, 32(2):276-284.
31. Li J., Laursen T.M., Precht D.H., Olsen J., Mortensen P.B. Hospitalization for mental illness among parents after the death of a child. New England Journal of Medicine 2005, 352(12):1190-1196.
32. Li J., Precht D.H., Mortensen P.B., Olsen J. Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Lancet 2003, 361(9355):363-367.
33. Malusky S.K. A concept analysis of family centered care in the NICU. Neonatal Network 2005, 24(6):25-32.
34. Martinez A.M., Partridge J.C., Yu V., Wee Tan K., Yeung C.Y., Lu J.H., Nishida H., Boo N.Y. Physician counselling practices and decision-making for extremely preterm infants in the Pacific Rim. Journal of Paediatrics and Child Health 2005, 41(4):209-214.
35. McHaffie H.E., Lyon A.J., Hume R. Deciding on treatment limitation for neonates: the parents' perspective. European Journal of Pediatrics 2001, 160(6):339-344.
36. McNamara D.G., Dickinson A.R., Byrnes C.A. The perceptions and preferences of parents of children with tracheostomies in a study of humidification therapy. Journal of Child Health Care 2009, 13(3):179-197.
37. Menahem S., Grimwade J. Pregnancy termination following prenatal diagnosis of serious heart disease in the fetus. Early Human Development 2003, 73(1/2):71-78.
38. Meyer E.C., Burns J.P., Griffith J.L., Truog R.D. Parental perspectives on end-of-life care in the pediatric intensive care unit. Critical Care Medicine 2002, 30(1):226-231.
39. Michelson K.N., Koogler T., Sullivan C., Ortega M., Hall E., Frader J. Parental views on withdrawing life-sustaining therapies in critically ill children. Archives of Pediatrics and Adolescent Medicine 2009, 163(11):986-992.
40. Moro T.T., Kavanaugh K., Savage T.A., Reyes M.R., Kimura R.E., Bhat R. Parent decision making for life support for extremely premature infants: from the prenatal through end-of-life period. Journal of Perinatal and Neonatal Nursing 2011, 25(1):52-60.
41. Morris A. Selective treatment of irreversibly impaired infants: decision-making at the threshold. Medical Law Review 2009, 17(3):347-376.
42. Moseley K.L., Church A., Hempel B., Yuan H., Goold S.D., Freed G.L. End-of-life choices for African-American and white infants in a neonatal intensive-care unit: a pilot study. Journal of the National Medical Association 2004, 96(7):933-937.
43. Olsen J., Li J., Precht D.H. Hospitalization because of diabetes and bereavement: a national cohort study of parents who lost a child. Diabetic Medicine 2005, 22(10):1338-1342.
44. Ortenstrand A., Westrup B., Brostrom E.B., Sarman I., Akerstrom S., Brune T., Lindberg L., Waldenstrom U. The Stockholm Neonatal Family Centered Care Study: effects on length of stay and infant morbidity. Pediatrics 2010, 125(2):e278-e285.
45. Partridge J.C., Martinez A.M., Nishida H., Boo N.Y., Tan K.W., Yeung C.Y., Lu J.H., Yu V.Y. International comparison of care for very low birth weight infants: parents' perceptions of counseling and decision-making. Pediatrics 2005, 116(2):e263-e271.
46. Payot A., Gendron S., Lefebvre F., Doucet H. Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision?. Social Science and Medicine 2007, 64(7):1487-1500.
47. Pepper D., Rempel G., Austin W., Ceci C., Hendson L. More than information: a qualitative study of parents' perspectives on neonatal intensive care at the extremes of prematurity. Advances in Neonatal Care 2012, 12(5):303-309.
48. Rauch E.R., Smulian J.C., DePrince K., Ananth C.V., Marcella S.W. Pregnancy interruption after second trimester diagnosis of fetal structural anomalies: the New Jersey Fetal Abnormalities Registry. American Journal of Obstetrics and Gynecology 2005, 193(4):1492-1497.
49. Redlinger-Grosse K., Bernhardt B.A., Berg K., Muenke M., Biesecker B.B. The decision to continue: the experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. American Journal of Medical Genetics 2002, 112(4):369-378.
50. Rempel G.R., Cender L.M., Lynam M.J., Sandor G.G., Farquharson D. Parents' perspectives on decision making after antenatal diagnosis of congenital heart disease. Journal of Obstetric, Gynecologic, and Neonatal Nursing 2004, 33(1):64-70.
51. Roy R., Aladangady N., Costeloe K., Larcher V. Decision making and modes of death in a tertiary neonatal unit. Archives of Disease in Childhood, Fetal and Neonatal Edition 2004, 89(6):F527-F530.
52. Sharman M., Meert K.L., Sarnaik A.P. What influences parents' decisions to limit or withdraw life support?. Pediatric Critical Care Medicine 2005, 6(5):513-518.
53. Simon T.D., Berry J., Feudtner C., Stone B.L., Sheng X., Bratton S.L., Dean J.M., Srivastava R. Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics 2010, 126(4):647-655.
54. Snowdon C., Elbourne D., Garcia J. It was a snap decision: parental and professional perspectives on the speed of decisions about participation in perinatal randomised controlled trials. Social Science and Medicine 2006, 62(9):2279-2290.
55. Srivastava R., Stone B.L., Murphy N.A. Hospitalist care of the medically complex child. Pediatric Clinics of North America 2005, 52(4):1165-1187.
56. Stiggelbout A.M., Van der Weijden T., De Wit M.P., Frosch D., Legare F., Montori V.M., Trevena L., Elwyn G. Shared decision making: really putting patients at the centre of healthcare. British Medical Journal 2012, 344:e256.
57. Toebbe S., Yehle K., Kirkpatrick J., Coddington J. Hypoplastic left heart syndrome: parent support for early decision making. Journal of Pediatric Nursing 2012, 28(4):383-392.
58. van den Brink-Muinen A., van Dulmen S.M., de Haes H.C., Visser A.P., Schellevis F.G., Bensing J.M. Has patients' involvement in the decision-making process changed over time?. Health Expectation 2006, 9(4):333-342.
59. Vandvik I.H., Forde R. Ethical issues in parental decision-making: an interview study of mothers of children with hypoplastic left heart syndrome. Acta Paediatrica 2000, 89(9):1129-1133.
60. Verhagen A.A., de Vos M., Dorscheidt J.H., Engels B., Hubben J.H., Sauer P.J. Conflicts about end-of-life decisions in NICUs in the Netherlands. Pediatrics 2009, 124(1):e112-e119.
61. Whittemore R., Knafl K. The integrative review: updated methodology. Journal of Advanced Nursing 2005, 52(5):546-553.
62. Winkfield vs Children's Hospital Oakland. Northern District of California, 2014.
63. Zyblewski S.C., Hill E.G., Shirali G., Atz A., Forbus G., Gonzalez J., Hlavacek A. Chromosomal anomalies influence parental treatment decisions in relation to prenatally diagnosed congenital heart disease. Pediatric Cardiology 2009, 30(8):1105-1111.