When i go in to wake them ... i wonder: Parental perceptions about congenital long QT syndrome

Journal of the American Academy of Nurse Practitioners

Volumn 18, Issue 6, 2006, Pages 284-290

  Farnsworth, Monica M ^c,f   Fosyth, Diane ^a,d   Haglund, Carla ^c,e   Ackerman, Michael J ^a,b,c,e  

^a Department of Nursing ^*

^b Sudden Death Genomics Laboratory   (United States)

^c MAYO CLINIC   (United States)

^d WINONA STATE UNIVERSITY   (United States)

^e Information Technology   (United States)

^f ST MARY S HOSPITAL   (United States)

Author keywords

Cardiac arrest; Fear; Implantable cardioverter defibrillator (ICD); Long QT syndrome; Psychosocial

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ADULT; AGED; ARTICLE; ATTITUDE TO DEATH; ATTITUDE TO HEALTH; CHILD; EDUCATION; FEAR; FEMALE; HEALTH SERVICE; HUMAN; LIFESTYLE; LONG QT SYNDROME; MALE; MENTAL STRESS; MIDDLE AGED; NURSE ATTITUDE; NURSE PRACTITIONER; NURSING METHODOLOGY RESEARCH; ORGANIZATION AND MANAGEMENT; PARENT; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; QUALITY OF LIFE; SOCIAL SUPPORT; SUDDEN DEATH; UNCERTAINTY; UNITED STATES;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; AGED; ATTITUDE TO DEATH; ATTITUDE TO HEALTH; CHILD; DEATH, SUDDEN, CARDIAC; FEAR; FEMALE; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; LIFE STYLE; LONG QT SYNDROME; MALE; MIDDLE AGED; MINNESOTA; NURSE PRACTITIONERS; NURSE'S ROLE; NURSING METHODOLOGY RESEARCH; PARENTS; QUALITATIVE RESEARCH; QUALITY OF LIFE; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; UNCERTAINTY;

EID: 33746039364     PISSN: 10412972     EISSN: 17457599     Source Type: Journal    
DOI: 10.1111/j.1745-7599.2006.00132.x     Document Type: Article

References (22)

1. Ackerman, M. J 1998a). Long QT syndrome: Consultation with the specialist. Pediatrics in Review, 19 (7 232 238.
2. Ackerman, M. J 1998b). The long QT syndrome: Ion channel diseases of the Heart. Mayo Clinic Proceedings, 73, 250 269.
3. Ackerman, M. J 2004). Cardiac channelopathies: it's in the genes. Nature Medicine, 10, 463 464.
4. Ackerman, M. J 2005). Genetic testing for risk stratification in hypertrophic cardiomyopathy and long QT syndrome: Fact or fiction. Current Opinions in Cardiology, 20, 175 181.
5. Ackerman, M. J., Tester, D. J. Driscoll, D. J 2001). Molecular autopsy of sudden unexplained death in the young. Journal of Forensic Medicine and Pathology, 22 (2 105 111.
6. Ackerman, M. J., Tester, D. J., Porter, C. J. Edwards, W. D 1999). Molecular diagnosis of the inherited long-QT syndrome in a woman who died after near-drowning. New England Journal of Medicine, 341, 1121 1125.
7. Arteaga, W. Windle, J 1995). The quality of life of patients with life threatening arrhythmias. Archives of Internal Medicine, 155 (19 2086 2091.
8. Carroll, D., Hamilton, G. McGovern, B 1999). Changes in health status and quality of life and the impact of uncertainty in patients who survive life threatening arrhythmias. Heart & Lung: The Journal of Acute and Critical Care, 28 (4 251 260.
9. Chatrath, R., Porter, C. J. Ackerman, M. J 2002). Role of transvenous implantable cardioverter-defibrillators in preventing sudden cardiac death in children, adolescents, and young adults. Mayo Clinic Proceedings 77, 226 231.
10. Garwick, A., Patterson, J., Meschke, L., Bennett, F. Blum R 2002). The uncertainty of preadolescents' chronic health conditions and family distress. Journal of Family Nursing, 8 (1 11 31.
11. Maclean, B 1999). Parenting of at-risk infants in the face of uncertainty: Home apnea monitoring of subsibs. International Pediatric Nursing, 14 (3 201 209.
12. Moss, A. J., Zareba, W., Hall, W. J., Schwartz, P. J., Crampton, R. S., Benhorin, J., et al 2000). Effectiveness and limitations of beta-blocker therapy in congenital long-QT syndrome. Circulation, 101, 616 623.
13. Nemec, J., Hejlik, J. B., Win-Kuang, S. Ackerman, M. J 2003). Catacholamine-induced T-wave lability in congenital long QT syndrome: A novel phenomenon associated with syncope and cardiac arrest. Mayo Clinic Proceedings, 78, 40 50.
14. Priori, S. G., Napolitano, C., Schwartz, P. J., Grillo, M., Bloise, R., Rorchetti, E., et al 2004). Association of long-QT syndrome loci and cardiac events among patients with B-blockers. JAMA, 292, 1341 1344.
15. Santacroce, S 2002). Uncertainty, anxiety, and symptoms of posttraumatic stress in parents of children recently diagnosed with cancer. Journal of Pediatric Oncology Nursing, 19 (3 104 111.
16. Schwartz, P., Zaza, A., Locati, E. Moss, A 1991). Stress and sudden death. Circulation, 4 (Suppl 1171 1180.
17. Stewart, J. Mishel, M 2000). Uncertainty in childhood illness: A synthesis of the parent and child literature. Scholarly Inquiry for Nursing Practice: An International Journal, 14 (4 299 314.
18. Tester, D. J., Spoon, D. B., Valdivia, H. H., Makielski, J. C. Ackerman, M. J 2004). Targeted mutational analysis of the cardiac ryanodine receptor (RyR2) in sudden unexplained death: a molecular autopsy of 49 medical examiner/coroner's cases. Mayo Clinic Proceedings, 79, 1380 1384.
19. Villain, E., Denjoy, I., Lupoglazoff, J. M., Guicheney, P., Hainque, B., Lucet, V., et al 2004). Low incidence of cardiac events with B-blocking therapy in children with long-QT syndrome. European Heart Journal, 25, 1405 1411.
20. Vincent, M 2000). Long QT-syndrome. Cardiology Clinics, 18 (2 309 322.
21. Woodgate, L. Degner, L 2001). "Nothing is carved in stone!" Uncertainty in children with cancer and their families. European Journal of Oncology Nursing, 6 (4 191 202.
22. Zipes, D. P., Ackerman, M. J., Estes, N. A., Grant, A. O., Myerburg, R. J. Van Hare, G 2005). Task force 7: Arrhythmias. Journal of American College of Cardiology, 45, 1354 1363.