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Cardiac rhythm devices in pediatric patients: Impact on family functioning and parent's health-related quality of life


Schnellmann, Anne-Sophie; Balmer, Christian; Lehmann, Phaedra; Werner, Helene (2024). Cardiac rhythm devices in pediatric patients: Impact on family functioning and parent's health-related quality of life. Journal of Child Health Care, 28(1):37-52.

Abstract

This study compares the impact of children's cardiac rhythm devices and health status on their parents with that of healthy controls. Furthermore, it aims to ascertain whether sociodemographic characteristics and medical data are associated with parent-reported impacts. This cross-sectional study is part of a comprehensive single-center study of long-term psychosocial outcomes in pediatric patients with pacemakers and implantable cardioverter defibrillators. The study includes 69 patients with their parents: 69 mothers and 57 fathers. Parents responded to the Pediatric Quality of Life Inventory Family Impact Module and to open-ended questions assessing impact on family life and treatment satisfaction. Parents reported more negative impact on family life than healthy controls in all three summary scores. Among fathers, presence of a child's congenital heart disease and female sex is associated with lower family function. No group differences emerged regarding device type. Positive and negative cognitive aspects predominated for patients' mothers and fathers. However, one substantial difference is that mothers reported more positive and negative emotional impact than fathers. We conclude that parents' well-being should be addressed in clinical contexts, especially through emotional and practical support and open communication focused on parents' worries and concerns.

Abstract

This study compares the impact of children's cardiac rhythm devices and health status on their parents with that of healthy controls. Furthermore, it aims to ascertain whether sociodemographic characteristics and medical data are associated with parent-reported impacts. This cross-sectional study is part of a comprehensive single-center study of long-term psychosocial outcomes in pediatric patients with pacemakers and implantable cardioverter defibrillators. The study includes 69 patients with their parents: 69 mothers and 57 fathers. Parents responded to the Pediatric Quality of Life Inventory Family Impact Module and to open-ended questions assessing impact on family life and treatment satisfaction. Parents reported more negative impact on family life than healthy controls in all three summary scores. Among fathers, presence of a child's congenital heart disease and female sex is associated with lower family function. No group differences emerged regarding device type. Positive and negative cognitive aspects predominated for patients' mothers and fathers. However, one substantial difference is that mothers reported more positive and negative emotional impact than fathers. We conclude that parents' well-being should be addressed in clinical contexts, especially through emotional and practical support and open communication focused on parents' worries and concerns.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
04 Faculty of Medicine > Psychiatric University Hospital Zurich > Clinic for Psychiatry, Psychotherapy, and Psychosomatics
04 Faculty of Medicine > University Children's Hospital Zurich > Clinic for Surgery
Dewey Decimal Classification:610 Medicine & health
Scopus Subject Areas:Health Sciences > Pediatrics, Perinatology and Child Health
Health Sciences > Pediatrics
Language:English
Date:1 March 2024
Deposited On:08 Aug 2022 15:42
Last Modified:27 Jun 2024 01:38
Publisher:Sage Publications
ISSN:1367-4935
OA Status:Closed
Publisher DOI:https://doi.org/10.1177/13674935221085388
PubMed ID:35549925