메뉴 건너뛰기




Volumn 17, Issue 6, 2007, Pages 824-837

Safeguarding precarious survival: Parenting children who have life-threatening heart disease

Author keywords

Congenital heart disease; Grounded theory; Hypoplastic left heart syndrome; Parenting; Technology

Indexed keywords

ADULT; ARTICLE; CHILD CARE; CHILD PARENT RELATION; CONGENITAL HEART DISEASE; FEMALE; GROUNDED THEORY; HEALTH CARE PERSONNEL; HEALTH PROMOTION; HUMAN; HYPOPLASTIC LEFT HEART SYNDROME; INTERVIEW; MALE; MEDICAL TECHNOLOGY; PARENTAL ATTITUDE; PRIORITY JOURNAL; SURGICAL APPROACH; SURVIVAL; UNCERTAINTY;

EID: 34250781124     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732307303164     Document Type: Article
Times cited : (74)

References (51)
  • 2
    • 34250771143 scopus 로고    scopus 로고
    • Unpublished manuscript, University of Alberta, Edmonton, Canada
    • Bergum, V. (1996). The house that technology built. Unpublished manuscript, University of Alberta, Edmonton, Canada.
    • (1996) The House That Technology Built
    • Bergum, V.1
  • 3
    • 0031810617 scopus 로고    scopus 로고
    • Current status of staged reconstruction for hypoplastic left heart syndrome
    • Bove, E.L. (1998). Current status of staged reconstruction for hypoplastic left heart syndrome. Pediatric Cardiology, 19 (4), 308-315.
    • (1998) Pediatric Cardiology , vol.19 , Issue.4 , pp. 308-315
    • Bove, E.L.1
  • 4
    • 33644883924 scopus 로고    scopus 로고
    • Illuminating the clinical nurse specialist role of advanced practice nursing: A qualitative study
    • Canam, C. (2005). Illuminating the clinical nurse specialist role of advanced practice nursing: A qualitative study. Nursing Leadership, 18 (4), 70-89.
    • (2005) Nursing Leadership , vol.18 , Issue.4 , pp. 70-89
    • Canam, C.1
  • 5
    • 0036331521 scopus 로고    scopus 로고
    • Clinical management of infants with HLHS in the United States, 1988-1997
    • Chang, R.R., Chen, A.Y., & Klitzner, T.S. (2002). Clinical management of infants with HLHS in the United States, 1988-1997. Pediatrics, 110 (2), 292-298.
    • (2002) Pediatrics , vol.110 , Issue.2 , pp. 292-298
    • Chang, R.R.1    Chen, A.Y.2    Klitzner, T.S.3
  • 6
    • 0002208260 scopus 로고
    • The grounded theory method: An explication and interpretation
    • In R. M. Emerson (Ed.) Prospect Heights, IL: Waveland
    • Charmaz, K. (1983). The grounded theory method: An explication and interpretation. In R. M. Emerson (Ed.), Contemporary field research: A collection of readings (pp. 109-126). Prospect Heights, IL: Waveland.
    • (1983) Contemporary Field Research: A Collection of Readings , pp. 109-126
    • Charmaz, K.1
  • 7
    • 0001834367 scopus 로고    scopus 로고
    • Grounded theory: Objectivist and constructivist methods
    • In N. K. Denzin & Y. S. Lincoln (Eds.) Thousand Oaks, CA: Sage
    • Charmaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 509-535). Thousand Oaks, CA: Sage.
    • (2000) Handbook of Qualitative Research , pp. 509-535
    • Charmaz, K.1
  • 8
    • 33846490205 scopus 로고    scopus 로고
    • Qualitative interviewing and grounded theory
    • In J. A. Holstein & J. F. Gubrium (Eds.) Thousand Oaks, CA: Sage
    • Charmaz, K. (2003). Qualitative interviewing and grounded theory. In J. A. Holstein & J. F. Gubrium (Eds.), Inside interviewing: New lenses, new concerns (pp. 311-330). Thousand Oaks, CA: Sage.
    • (2003) Inside Interviewing: New Lenses, New Concerns , pp. 311-330
    • Charmaz, K.1
  • 9
    • 4944233700 scopus 로고    scopus 로고
    • Premises, principles, and practices in qualitative research: Revisiting the foundations
    • Charmaz, K. (2004). Premises, principles, and practices in qualitative research: Revisiting the foundations. Qualitative Health Research, 14 (7), 976-993.
    • (2004) Qualitative Health Research , vol.14 , Issue.7 , pp. 976-993
    • Charmaz, K.1
  • 10
    • 0035669560 scopus 로고    scopus 로고
    • The role of fetal surgery in life threatening anomalies
    • Choi, S.H. (2001). The role of fetal surgery in life threatening anomalies. Yonsei Medical Journal, 42 (6), 681-685.
    • (2001) Yonsei Medical Journal , vol.42 , Issue.6 , pp. 681-685
    • Choi, S.H.1
  • 11
    • 0141941194 scopus 로고    scopus 로고
    • Hypoplastic left heart syndrome
    • Claxon-McKinney, B. (2001). Hypoplastic left heart syndrome. Pediatric Nursing, 27 (3), 245-252.
    • (2001) Pediatric Nursing , vol.27 , Issue.3 , pp. 245-252
    • Claxon-McKinney, B.1
  • 13
    • 0011356450 scopus 로고    scopus 로고
    • Hypoplastic left heart syndrome
    • In R. H. Anderson, E. J. Baker, F. J. Macartney, M. L. Rigby, E. A. Shinebourne, & M. J. Tynan (Eds.) Toronto, Canada: Churchill Livingston
    • Dhillon, R., & Redington, A.N. (2002). Hypoplastic left heart syndrome. In R. H. Anderson, E. J. Baker, F. J. Macartney, M. L. Rigby, E. A. Shinebourne, & M. J. Tynan (Eds.), Paediatric cardiology (pp. 1191-1211). Toronto, Canada: Churchill Livingston.
    • (2002) Paediatric Cardiology , pp. 1191-1211
    • Dhillon, R.1    Redington, A.N.2
  • 14
    • 33745293896 scopus 로고    scopus 로고
    • The role of value priorities in paternal and maternal involvement in child care
    • Gaunt, R. (2005). The role of value priorities in paternal and maternal involvement in child care. Journal of Marriage and Family, 67 (3), 643-655.
    • (2005) Journal of Marriage and Family , vol.67 , Issue.3 , pp. 643-655
    • Gaunt, R.1
  • 19
    • 0033731006 scopus 로고    scopus 로고
    • Neurodevelopmental outcome of patients after the Fontan operation: A comparison between children with hypoplastic left heart syndrome and other functional single ventricle lesions
    • Goldberg, C.S., Schwartz, E.M., Brunberg, J.A., Mosca, R.S., Bove, E.L., Schork, M.A., et al. (2000). 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 (5), 646-652.
    • (2000) Journal of Pediatrics , vol.137 , Issue.5 , pp. 646-652
    • Goldberg, C.S.1    Schwartz, E.M.2    Brunberg, J.A.3    Mosca, R.S.4    Bove, E.L.5    Schork, M.A.6
  • 20
    • 0036532270 scopus 로고    scopus 로고
    • Management of hypoplastic left heart syndrome in the 1990s
    • Gutgesell, H.P., & Gibson, J. (2002). Management of hypoplastic left heart syndrome in the 1990s. American Journal of Cardiology, 89 (7), 842-846.
    • (2002) American Journal of Cardiology , vol.89 , Issue.7 , pp. 842-846
    • Gutgesell, H.P.1    Gibson, J.2
  • 21
    • 1042302111 scopus 로고    scopus 로고
    • A double concern: Grandmothers' experiences when a small grandchild is critically ill
    • Hall, E.O. (2004 a). A double concern: Grandmothers' experiences when a small grandchild is critically ill. Journal of Pediatric Nursing, 19 (1), 61-69.
    • (2004) Journal of Pediatric Nursing , vol.19 , Issue.1 , pp. 61-69
    • Hall, E.O.1
  • 22
    • 1642463474 scopus 로고    scopus 로고
    • A double concern: Danish grandfathers' experiences when a small grandchild is critically ill
    • Hall, E.O. (2004 b). A double concern: Danish grandfathers' experiences when a small grandchild is critically ill. Intensive & Critical Care Nursing, 20 (1), 14 - 21.
    • (2004) Intensive & Critical Care Nursing , vol.20 , Issue.1 , pp. 14-21
    • Hall, E.O.1
  • 23
    • 0037238598 scopus 로고    scopus 로고
    • Developmental outcome of patients with hypoplastic left heart syndrome treated with heart transplantation
    • Ikle, L., Hale, K., Fashaw, L., Boucek, M., & Rosenberg, A.A. (2003). Developmental outcome of patients with hypoplastic left heart syndrome treated with heart transplantation. Journal of Pediatrics, 142 (1), 20-25.
    • (2003) Journal of Pediatrics , vol.142 , Issue.1 , pp. 20-25
    • Ikle, L.1    Hale, K.2    Fashaw, L.3    Boucek, M.4    Rosenberg, A.A.5
  • 24
    • 0031309659 scopus 로고    scopus 로고
    • Limitations to survival for infants with hypoplastic left heart syndrome before and after transplant: The Loma Linda experience
    • Johnston, J.K., Chinnock, R.E., Zuppan, C.W., Razzouk, A.J., Gundry, S.R., & Bailey, L.L. (1997). Limitations to survival for infants with hypoplastic left heart syndrome before and after transplant: The Loma Linda experience. Journal of Transplant Coordination, 7 (4), 180-186.
    • (1997) Journal of Transplant Coordination , vol.7 , Issue.4 , pp. 180-186
    • Johnston, J.K.1    Chinnock, R.E.2    Zuppan, C.W.3    Razzouk, A.J.4    Gundry, S.R.5    Bailey, L.L.6
  • 25
    • 0030872436 scopus 로고    scopus 로고
    • Survival and risk factor analysis for the Norwood procedure for hypoplastic left heart syndrome
    • Kern, J.H., Hayes, C.J., Michler, R.E., Gersony, W.M., & Quaegebeur, J.M. (1997). Survival and risk factor analysis for the Norwood procedure for hypoplastic left heart syndrome. American Journal of Cardiology, 80 (2), 170 - 174.
    • (1997) American Journal of Cardiology , vol.80 , Issue.2 , pp. 170-174
    • Kern, J.H.1    Hayes, C.J.2    Michler, R.E.3    Gersony, W.M.4    Quaegebeur, J.M.5
  • 26
    • 0031786306 scopus 로고    scopus 로고
    • Early developmental outcome after the Norwood procedure for hypoplastic left heart syndrome
    • Kern, J.H., Hinton, V.J., Nereo, N.E., Hayes, C.J., & Gersony, W.M. (1998). Early developmental outcome after the Norwood procedure for hypoplastic left heart syndrome. Pediatrics, 102 (5), 1148-1152.
    • (1998) Pediatrics , vol.102 , Issue.5 , pp. 1148-1152
    • Kern, J.H.1    Hinton, V.J.2    Nereo, N.E.3    Hayes, C.J.4    Gersony, W.M.5
  • 27
    • 0242718788 scopus 로고    scopus 로고
    • The challenge of normalization for families of children with chronic conditions
    • Knafl, K.A., & Deatrick, J.A. (2002). The challenge of normalization for families of children with chronic conditions. Pediatric Nursing, 28 (1), 49-53.
    • (2002) Pediatric Nursing , vol.28 , Issue.1 , pp. 49-53
    • Knafl, K.A.1    Deatrick, J.A.2
  • 28
    • 20444489216 scopus 로고    scopus 로고
    • Discussing nonsurgical care with parents of newborns with hypoplastic left heart syndrome
    • Kon, A.A. (2005). Discussing nonsurgical care with parents of newborns with hypoplastic left heart syndrome. Newborn and Infant Nursing Reviews, 5 (2), 60-68.
    • (2005) Newborn and Infant Nursing Reviews , vol.5 , Issue.2 , pp. 60-68
    • Kon, A.A.1
  • 29
    • 0035010554 scopus 로고    scopus 로고
    • Impact of prenatal diagnosis on survival and early neurologic morbidity in neonates with the hypoplastic heart syndrome
    • Mahle, W.T., Clancy, R.R., McGaurn, S.P., Goin, J.E., & Clark, B.J. (2001). Impact of prenatal diagnosis on survival and early neurologic morbidity in neonates with the hypoplastic heart syndrome. Pediatrics, 107 (6), 1277-1282.
    • (2001) Pediatrics , vol.107 , Issue.6 , pp. 1277-1282
    • Mahle, W.T.1    Clancy, R.R.2    McGaurn, S.P.3    Goin, J.E.4    Clark, B.J.5
  • 30
    • 0034099787 scopus 로고    scopus 로고
    • Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome
    • Mahle, W.T., Clancy, R.R., Moss, E.M., Gerdes, M., Jobes, D.R., & Wernosvsky, G. (2000). Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics, 105 (5), 1089-1089.
    • (2000) Pediatrics , vol.105 , Issue.5 , pp. 1089-1089
    • Mahle, W.T.1    Clancy, R.R.2    Moss, E.M.3    Gerdes, M.4    Jobes, D.R.5    Wernosvsky, G.6
  • 32
    • 0032989257 scopus 로고    scopus 로고
    • Prenatally diagnosed hypoplastic left heart syndrome: Outcomes after postnatal surgery
    • Munn, M.B., Brumfield, C.G., Lau, Y., & Colvin, E.V. (1999). Prenatally diagnosed hypoplastic left heart syndrome: Outcomes after postnatal surgery. Journal of Maternal-Fetal Medicine, 8 (4), 147 - 50.
    • (1999) Journal of Maternal-Fetal Medicine , vol.8 , Issue.4 , pp. 147-150
    • Munn, M.B.1    Brumfield, C.G.2    Lau, Y.3    Colvin, E.V.4
  • 33
    • 0035260601 scopus 로고    scopus 로고
    • Living in a house of cards: Family experiences with long-term childhood technology dependence
    • O'Brien, M.E. (2001). Living in a house of cards: Family experiences with long-term childhood technology dependence. Journal of Pediatric Nursing, 16 (1), 13-22.
    • (2001) Journal of Pediatric Nursing , vol.16 , Issue.1 , pp. 13-22
    • O'Brien, M.E.1
  • 34
    • 0034576395 scopus 로고    scopus 로고
    • Dying of a broken heart: Ethics and law in a case of hypoplastic left heart syndrome
    • Pager, C.K. (2000). Dying of a broken heart: Ethics and law in a case of hypoplastic left heart syndrome. Journal of Perinatology, 20, 535-539.
    • (2000) Journal of Perinatology , vol.20 , pp. 535-539
    • Pager, C.K.1
  • 35
    • 0035672984 scopus 로고    scopus 로고
    • Fetal surgery for congenital heart disease
    • Park, H.K., & Park, Y.H. (2001). Fetal surgery for congenital heart disease. Yonsei Medical Journal, 42 (6), 686-694.
    • (2001) Yonsei Medical Journal , vol.42 , Issue.6 , pp. 686-694
    • Park, H.K.1    Park, Y.H.2
  • 37
    • 0036985268 scopus 로고    scopus 로고
    • Parenting and childhood chronicity: Making visible the invisible work
    • Ray, L.D. (2002). Parenting and childhood chronicity: Making visible the invisible work. Journal of Pediatric Nursing, 17 (6), 424-438.
    • (2002) Journal of Pediatric Nursing , vol.17 , Issue.6 , pp. 424-438
    • Ray, L.D.1
  • 39
    • 1042302112 scopus 로고    scopus 로고
    • Technological advances in pediatrics: Challenges for parents and nurses
    • Rempel, G.R. (2004). Technological advances in pediatrics: Challenges for parents and nurses. Journal of Pediatric Nursing, 19 (1), 13-24.
    • (2004) Journal of Pediatric Nursing , vol.19 , Issue.1 , pp. 13-24
    • Rempel, G.R.1
  • 40
    • 34250741490 scopus 로고
    • Parent perceptions of quality of life of children with HLHS who have undergone the Norwood surgical procedure
    • Unpublished master's thesis, McMaster University, London, Ontario, Canada
    • Ross Keizer, J. (1993). Parent perceptions of quality of life of children with HLHS who have undergone the Norwood surgical procedure. Unpublished master's thesis, McMaster University, London, Ontario, Canada.
    • (1993)
    • Ross Keizer, J.1
  • 41
    • 9344259698 scopus 로고    scopus 로고
    • Outcome of right ventricle-to-pulmonary artery shunt in first-stage palliation of hypoplastic left heart syndrome: A multi-institutional study
    • Sano, S., Ishino, K., Kado, H., Shiokawa, Y., Sakamoto, K., Yokota, M., et al. (2004). Outcome of right ventricle-to-pulmonary artery shunt in first-stage palliation of hypoplastic left heart syndrome: A multi-institutional study. Annals of Thoracic Surgery, 78 (6), 1951-1958.
    • (2004) Annals of Thoracic Surgery 78 , Issue.6 , pp. 1951-1958
    • Sano, S.1    Ishino, K.2    Kado, H.3    Shiokawa, Y.4    Sakamoto, K.5    Yokota, M.6
  • 42
    • 13744260308 scopus 로고    scopus 로고
    • Management of infants with hypoplastic left heart syndrome: Integrating research into nursing practice
    • Soetenga, D., & Mussatto, K.A. (2004). Management of infants with hypoplastic left heart syndrome: Integrating research into nursing practice. Critical Care Nurse, 24 (6), 46-52.
    • (2004) Critical Care Nurse , vol.24 , Issue.6 , pp. 46-52
    • Soetenga, D.1    Mussatto, K.A.2
  • 43
    • 0041336995 scopus 로고    scopus 로고
    • Nihilism in the 1990s: The true mortality of congenital diaphragmatic hernia
    • Stege, G., Fenton, A., & Jaffray, B. (2003). Nihilism in the 1990s: The true mortality of congenital diaphragmatic hernia. Pediatrics, 112 (3 Pt 1), 532-535.
    • (2003) Pediatrics , vol.112 , Issue.3 PART 1 , pp. 532-535
    • Stege, G.1    Fenton, A.2    Jaffray, B.3
  • 46
    • 0030095846 scopus 로고    scopus 로고
    • The influence of illness severity and family resources on maternal uncertainty during critical pediatric hospitalization
    • Tomlinson, P.S., Kirschbaum, M., Harbaugh, B., & Anderson, K.H. (1996). The influence of illness severity and family resources on maternal uncertainty during critical pediatric hospitalization. American Journal of Critical Care, 5 (2), 140-146.
    • (1996) American Journal of Critical Care , vol.5 , Issue.2 , pp. 140-146
    • Tomlinson, P.S.1    Kirschbaum, M.2    Harbaugh, B.3    Anderson, K.H.4
  • 47
    • 0027024830 scopus 로고
    • On the nature of social support for families of critically ill children
    • Tomlinson, P.S., & Mitchell, K.E. (1992). On the nature of social support for families of critically ill children. Journal of Pediatric Nursing, 7 (6), 386-394.
    • (1992) Journal of Pediatric Nursing , vol.7 , Issue.6 , pp. 386-394
    • Tomlinson, P.S.1    Mitchell, K.E.2
  • 48
    • 0037167689 scopus 로고    scopus 로고
    • Improved survival of patients undergoing palliation of HLHS: Lessons learned from 115 consecutive patients
    • Tweddell, J.S., Hoffman, G.M., Mussatto, K.A., Fedderly, R.T., Berger, S., Jaquiss, R., et al. (2002). Improved survival of patients undergoing palliation of HLHS: Lessons learned from 115 consecutive patients. Circulation, 106 (Suppl. 1), 182-189.
    • (2002) Circulation , vol.106 , Issue.SUPPL. 1 , pp. 182-189
    • Tweddell, J.S.1    Hoffman, G.M.2    Mussatto, K.A.3    Fedderly, R.T.4    Berger, S.5    Jaquiss, R.6
  • 49
  • 50
    • 0036846154 scopus 로고    scopus 로고
    • Cardiac surgery 2002: Staged repair of hypoplastic left heart syndrome
    • Wright, C. (2002). Cardiac surgery 2002: Staged repair of hypoplastic left heart syndrome. Critical Care Nursing Quarterly, 25 (3), 72-78.
    • (2002) Critical Care Nursing Quarterly , vol.25 , Issue.3 , pp. 72-78
    • Wright, C.1
  • 51
    • 0037269127 scopus 로고    scopus 로고
    • Ethical principles and parental choice: Treatment options for neonates with hypoplastic left heart syndrome
    • Zeigler, V.L. (2003). Ethical principles and parental choice: Treatment options for neonates with hypoplastic left heart syndrome. Pediatric Nursing, 29 (1), 65-69.
    • (2003) Pediatric Nursing , vol.29 , Issue.1 , pp. 65-69
    • Zeigler, V.L.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.