Technological advances in pediatrics: Challenges for parents and nurses

Journal of Pediatric Nursing

Volumn 19, Issue 1, 2004, Pages 13-24

  Rempel, Gwen R ^a  

^a UNIVERSITY OF ALBERTA   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

CAREGIVER; CHILD PARENT RELATION; CONGENITAL DISORDER; COPING BEHAVIOR; DISEASE SEVERITY; EMOTION; HEART SURGERY; HUMAN; INTESTINE SURGERY; MEDICAL INFORMATION SYSTEM; NEWBORN SURGERY; NURSING; ORGAN TRANSPLANTATION; PALLIATIVE THERAPY; PARENTAL BEHAVIOR; REVIEW; SHUNTING; SURVIVAL RATE; THEORETICAL MODEL; TRACHEA RECONSTRUCTION;

EID: 1042302112     PISSN: 08825963     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.pedn.2003.09.003     Document Type: Article

References (55)

1. Allan L., Hornberger L.K., Sharland G. Textbook of fetal cardiology. 2000;Greenwich Medical Media, London.
2. Bailey L. Long term outcomes of transplantation. 2001;. May, Paper presented at the Third World Congress of Pediatric Cardiology and Cardiac Surgery, Toronto, Ontario.
3. Bergum V. Knowledge for ethical care. Nursing Ethics. 1:1994;71-79.
4. Botto L.D., Correa A., Erickson J.D. Racial and temporal variations in the prevalence of heart defects. Pediatrics. 107:2001;e32.
5. Bove E.L. Current status of staged reconstruction for hypoplastic left heart syndrome. Pediatric Cardiology. 19:1998;308-315.
6. Chang R.R., Chen A.Y., Klitzner T.S. Clinical management of infants with HLHS in the United States, 1988-1997. Pediatrics. 110:2002;292-298.
7. Clark S.M., Miles M.S. Conflicting responses The experiences of fathers of infants diagnosed with severe congenital heart disease . Journal of the Society of Pediatric Nurses. 4:(1):1999;7-14.
8. Claxon-McKinney B. Hypoplastic left heart syndrome. Pediatric Nursing. 27:2001;245-252.
9. Cohen M.H. The triggers of heightened parental uncertainty in chronic, life-threatening childhood illness. Qualitative Health Research. 5:(1):1995;63-77.
10. Cohn J.K. An empirical study of parents' reaction to the diagnosis of congenital heart disease in infants. Social Work in Health Care. 23:1996;67-79.
11. Cooper T.R., Caplan W.D., Garcia-Prats J.A., Brody B.A. The interrelationship of ethical issues in the transition from old paradigms to new technologies. The Journal of Clinical Ethics. 7:1996;243-250.
12. D'Arcy E. Congenital defects Mothers' reactions to first information . British Medical Journal. 3:1968;796-798.
13. Dellgren G., Koirala B., Sakopoulus A., Botta A., Joseph J., Benson L., et al. Pediatric heart transplantation Improving results in high-risk patients . Journal of Thoracic & Cardiovascular Surgery. 121:2001;782-791.
14. DeMaso D.R., Campis L.K., Wypij D., Bertram S., Lipshitz M., Freed M. The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. Journal of Pediatric Psychology. 16:1991;137-149.
15. Diachuk G. When a child has a birth defect. Field P.A., Marck P.B. Uncertain motherhood Negotiating the risks of the childbearing years . 1994;223-267 Sage, Thousand Oaks, CA.
16. Drotar D., Baskiewicz A., Irvin N., Kennell J., Klaus M. The adaptation of parents to the birth of an infant with a congenital malformation A hypothetical model . Pediatrics. 56:1975;710-717.
17. Dunst C.J., Trivette C.M. Empowerment, effective helpgiving practices and family-centered care. Pediatric Nursing. 22:1996;334-343.
18. Fortuna R.S., Chinnock R.E., Bailey L.L. Heart transplantation among 233 infants during the first six months of life The Loma Linda experience . Clinical Transplants. 1999;263-272.
19. Freitag-Koontz M.J. Parents' grief reaction to the diagnosis of their infant's severe neurologic impairment and static encephalophathy. Journal of Perinatal and Neonatal Nursing. 2:1988;45-57.
20. Garson A., Benson S., Ivler L., Patton C. Parental reactions to children with congenital heart disease. Child Psychiatry and Human Development. 9:1978;86-94.
21. Glaser H.H., Harrison G.S., Lynn D.B. Emotional implications of congenital heart disease in children. Pediatrics. 33:1964;367-379.
22. Goldberg C.S., Schwartz E.M., Brunberg J.A., Mosca R.S., Bove E.L., Schork A., et al. Neurodevelopmental outcome of patients after the Fontan operation A comparison between children with hypoplastic left heart syndrome and other functional single ventricle lesions . Journal of Pediatrics. 137:2000;646-652.
23. Goldberg S., Simmons R.J., Newman J., Campbell K., Fowler R.S. Congenital heart disease, parental stress, and infant-mother relationships. The Journal of Pediatrics. 119:1991;661-666.
24. Gutgesell H.P., Gibson J. Management of hypoplastic left heart syndrome in the 1990s. American Journal of Cardiology. 89:2002;842-846.
25. Hannan E.L., Racz M., Kavey R., Quaegebeur J.M., Williams R. Pediatric cardiac surgery The effect of hospital and surgeon volume on in-hospital mortality . Pediatrics. 101:1998;963-969.
26. Helm D.T., Miranda S., Ched N.A. Prenatal diagnosis of Down syndrome Mothers' reflections on supports needed from diagnosis to birth . Mental Retardation. 36:(1):1998;55-62.
27. Higgins S.S., Kayser-Jones J. Factors influencing parent decision making about pediatric cardiac transplantation. Journal of Pediatric Nursing. 11:1996;152-160.
28. Jaworski A.M. The heart of a mother. 1999;Baby Hearts, Panama City Beach, FL.
29. Jenkins R. Grieving the loss of the fantasy child. Home Healthcare Nurse. 14:1996;690-695.
30. Johnson B.S. Mothers' perceptions of parenting children with disabilities. MCN, The American Journal of Maternal/Child Nursing. 25:2000;127-132.
31. Kern J.H., Hinton V.J., Nereo N.E., Hayes C.J., Gersony W.M. Early developmental outcome after the Norwood procedure for hypoplastic left heart syndrome. Pediatrics. 102:1998;1148-1152.
32. Larson E. Reframing the meaning of disability to families The embrace of paradox . Social Science & Medicine. 47:1998;865-875.
33. Linde L.M., Rasof B., Dunn O., Rabb E. Attitudinal factors in congenital heart disease. Pediatrics. 38:(1):1966;92-101.
34. Mahle W.T., Clancy R.R., Moss E.M., Gerdes M., Jobes D.R., Wernovsky G. Neurodevelopmental outcome and lifestyle assessment in school-aged children with hypoplastic left heart syndrome. Pediatrics. 105:2000;1082-1089.
35. Miles M.S. Heart of the matter Cognitive-emotional responses of mothers to birth of an infant with CHD . 2000;. April, Paper presented at QHR 2000, Banff, AB.
36. Murray T. The worth of a child. 1996;University of California Press, Los Angeles.
37. Neufeld S.M., Query F., Drummond J. Respite care users who have children with chronic conditions Are they getting a break? Journal of Pediatric Nursing. 16:2001;234-244.
38. Northington L. Chronic sorrow in caregivers of school age children with sickle cell disease A grounded theory approach . Issues in Comprehensive Pediatric Nursing. 23:2000;141-154.
39. Norwood W.I. Hypoplastic left heart syndrome. Cardiology Clinics. 7:1989;377-385.
40. Pinelli J.M. A comparison of mothers' concerns regarding care-taking tasks of newborns with CHD before and after assuming their care. Journal of Advanced Nursing. 6:1981;261-270.
41. Rempel G. Knowing but not knowing Parent's experience of antenatal diagnosis of CHD . 1993;University of British Columbia, Vancouver, Canada. Unpublished master's thesis.
42. Rempel G. R., Cender L. M., Lynam M. J., Sandor G. G., & Farquharson, D. (in press). Antenatal diagnosis of congenital heart disease: Parents' perspectives on decision-making. Journal of Obstetric, Gynecologic, & Neonatal Nursing.
43. Robinson C.A. Nursing interventions with families A demand or an invitation to change? Journal of Advanced Nursing. 19:1994;897-904.
44. Rushton C.H. Moral decision making by parents of infants who have life-threatening congenital disorders. 1994;Catholic University of America, Washington, DC. Unpublished doctoral dissertation.
45. Solnit A.J., Stark M. Mourning and the birth of a defective child. Psychoanalytic Study Child. 16:1961;524.
46. Stinson J., McKeever P. Mothers' information needs related to caring for infants at home following cardiac surgery. Journal of Pediatric Nursing. 10:(1):1995;48-57.
47. Stolting J.C. Where there is life, there is hope Hypoplastic left heart syndrome . Exceptional Parent Parenting Your Child With a Disability . 28:1998;24-27.
48. Svavarsdottir E.K., McCubbin M. Parenthood transition for parents of an infant diagnosed with a congenital heart condition. Journal of Pediatric Nursing Nursing Care of Children & Families . 11:1996;207-216.
49. Swanson L.T. Treatment options for hypoplastic left heart syndrome A mother's perspective . Critical Care Nurse. 15:1995;70-72. 76-79.
50. Taeusch H., Ballard R. Avery's diseases of the newborn. 1998;Saunders, Sydney.
51. Tweddell J.S., Hoffman G.M., Mussatto K.A., Fedderly R.T., Berger S., Jaquiss R., et al. Improved survival of patients undergoing palliation of HLHS Lessons learned from 115 consecutive patients . Circulation. 106:(suppl I):2002;I-82-I-89.
52. Uzark K., Lincoln A., Lamberti J.J., Mainwaring R.D., Spicer R.L., Moore J.W. Neurodevelopmental outcomes in children with Fontan repair of functional single ventricle. Pediatrics. 101:1998;630-633.
53. Uzark K., Rosenthal A., Behrendt D., Becket M. Use of videotape to promote parenting of infants with serious congenital heart defects. Patient Education & Counseling. 7:1985;111-119.
54. Wright L.M., Leahey M. Nurses and families A guide to family assessment and intervention . 2000;F.A. Davis, Philadelphia.
55. Young R.K. Chronic sorrow Parents' response to the birth of a child with a defect . The American Journal of Maternal Child Nursing. 2:(1):1977;38-42.