When i go in to wake them ... i wonder

Parental perceptions about congenital long QT syndrome

Monica M. Farnsworth, Diane Fosyth, Carla Haglund, Michael John Ackerman

Research output: Contribution to journalArticle

23 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)284-290
Number of pages7
JournalJournal of the American Academy of Nurse Practitioners
Volume18
Issue number6
DOIs
StatePublished - Jun 2006

Fingerprint

Long QT Syndrome
Fear
Sudden Death
Parents
Health Personnel
Frustration
Nurse Practitioners
Implantable Defibrillators
Information Storage and Retrieval
Uncertainty
Life Style
Young Adult
Quality of Life

Keywords

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

ASJC Scopus subject areas

  • Nursing(all)

Cite this

When i go in to wake them ... i wonder : Parental perceptions about congenital long QT syndrome. / Farnsworth, Monica M.; Fosyth, Diane; Haglund, Carla; Ackerman, Michael John.

In: Journal of the American Academy of Nurse Practitioners, Vol. 18, No. 6, 06.2006, p. 284-290.

Research output: Contribution to journalArticle

@article{3dcee74cda8949e6a7b5649791e2245b,
title = "When i go in to wake them ... i wonder: Parental perceptions about congenital long QT syndrome",
abstract = "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.",
keywords = "Cardiac arrest, Fear, Implantable cardioverter defibrillator (ICD), Long QT syndrome, Psychosocial",
author = "Farnsworth, {Monica M.} and Diane Fosyth and Carla Haglund and Ackerman, {Michael John}",
year = "2006",
month = "6",
doi = "10.1111/j.1745-7599.2006.00132.x",
language = "English (US)",
volume = "18",
pages = "284--290",
journal = "Journal of the American Academy of Nurse Practitioners",
issn = "1041-2972",
publisher = "Wiley-Blackwell",
number = "6",

}

TY - JOUR

T1 - When i go in to wake them ... i wonder

T2 - Parental perceptions about congenital long QT syndrome

AU - Farnsworth, Monica M.

AU - Fosyth, Diane

AU - Haglund, Carla

AU - Ackerman, Michael John

PY - 2006/6

Y1 - 2006/6

N2 - 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.

AB - 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.

KW - Cardiac arrest

KW - Fear

KW - Implantable cardioverter defibrillator (ICD)

KW - Long QT syndrome

KW - Psychosocial

UR - http://www.scopus.com/inward/record.url?scp=33746039364&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=33746039364&partnerID=8YFLogxK

U2 - 10.1111/j.1745-7599.2006.00132.x

DO - 10.1111/j.1745-7599.2006.00132.x

M3 - Article

VL - 18

SP - 284

EP - 290

JO - Journal of the American Academy of Nurse Practitioners

JF - Journal of the American Academy of Nurse Practitioners

SN - 1041-2972

IS - 6

ER -