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

被引:24
作者
Farnsworth, MM
Fosyth, D
Haglund, C
Ackerman, MJ
机构
[1] Mayo Clin, Div Educ & Profess Dev, Rochester, MN USA
[2] Mayo Clin Coll Med, Dept Internal Med, Div Cardiovasc Dis, Rochester, MN USA
[3] Mayo Clin Coll Med, Dept Pediat & Adolescent Med, Div Pediat Cardiol, Rochester, MN USA
[4] Mayo Clin Coll Med, Dept Mol Pharmacol & Expt Therapeut, Rochester, MN USA
来源
JOURNAL OF THE AMERICAN ACADEMY OF NURSE PRACTITIONERS | 2006年 / 18卷 / 06期
关键词
fear; psychosocial; long QT syndrome; implantable cardioverter defibrillator (ICD); cardiac arrest;
D O I
10.1111/j.1745-7599.2006.00132.x
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Purpose: Congenital long QT syndrome (LQTS) affects an estimated 1 in 5000 persons, is characterized by QT interval prolongation, and has a clinical presentation ranging from asymptomatic longevity to sudden death in the young as the initial event. The purpose of this study was to describe the experiences of parents who have a child or children with LQTS. Information from parents of children with this diagnosis can provide insight to healthcare providers who care for these families. Data sources: The literature reveals that very little is known about the psychosocial aspects of this potential sudden death syndrome. This was a secondary analysis of a 2002 qualitative phenomenological primary study done to explore fear of death and quality of life for 58 patients with LQTS. The secondary study analyzed responses derived from 31 parents of children with LQTS. Conclusions: We speculated this far-reaching clinical spectrum would arouse fear and uncertainty for a parent of a child with LQTS. Results of the study revealed that parents with young children described fear of their children dying and strategies they used to manage their fear, as well as frustrations about lack of knowledge of LQTS among healthcare providers. When the diagnosis of LQTS is established during adolescence, the impact on the lives of children and their families is more significant. Implications for practice: In order to support families experiencing the stress of living daily with someone with LQTS, healthcare providers including nurse practitioners need a better understanding of the symptoms, diagnosis, management, and lifestyle implications of LQTS. Further studies are needed to understand the long-term psychosocial effects of children on beta-blockers, children with implantable cardioverter defibrillators, and children, adolescents, and young adults who survive a sudden death event.
引用
收藏
页码:284 / 290
页数:7
相关论文
共 22 条
[1]  
Ackerman M J, 1998, Pediatr Rev, V19, P232, DOI 10.1542/pir.19-7-232
[2]   Genetic testing for risk stratification in hypertrophic cardiomyopathy and long QT syndrome: fact or fiction? [J].
Ackerman, MJ .
CURRENT OPINION IN CARDIOLOGY, 2005, 20 (03) :175-181
[3]   Cardiac channelopathies: it's in the genes [J].
Ackerman, MJ .
NATURE MEDICINE, 2004, 10 (05) :463-464
[4]   Molecular diagnosis of the inherited long-QT syndrome in a woman who died after near-drowning [J].
Ackerman, MJ ;
Tester, DJ ;
Porter, CJ ;
Edwards, WD .
NEW ENGLAND JOURNAL OF MEDICINE, 1999, 341 (15) :1121-1125
[5]   Molecular autopsy of sudden unexplained death in the young [J].
Ackerman, MJ ;
Tester, DJ ;
Driscoll, DJ .
AMERICAN JOURNAL OF FORENSIC MEDICINE AND PATHOLOGY, 2001, 22 (02) :105-111
[6]   The long QT syndrome: Ion channel diseases of the heart [J].
Ackerman, MJ .
MAYO CLINIC PROCEEDINGS, 1998, 73 (03) :250-269
[7]   THE QUALITY-OF-LIFE OF PATIENTS WITH LIFE-THREATENING ARRHYTHMIAS [J].
ARTEAGA, WJ ;
WINDLE, JR .
ARCHIVES OF INTERNAL MEDICINE, 1995, 155 (19) :2086-2091
[8]   Changes in health status and quality of life and the impact of uncertainty in patients who survive life-threatening arrhythmias [J].
Carroll, DL ;
Hamilton, GA ;
McGovern, BA .
HEART & LUNG, 1999, 28 (04) :251-260
[9]   Role of transvenous Implantable cardioverter-defibrillators in preventing sudden cardiac death in children, adolescents, and young adults [J].
Chatrath, R ;
Porter, CBJ ;
Ackerman, MJ .
MAYO CLINIC PROCEEDINGS, 2002, 77 (03) :226-231
[10]  
Garwick A. W., 2002, J FAMILY NURSING, V8, P11, DOI DOI 10.1177/107484070200800102