Mixed method study of quality of life for children with trisomy 18 and 13 after cardiac surgery.
Cardiol Young
; 30(2): 231-237, 2020 Feb.
Article
en En
| MEDLINE
| ID: mdl-31964456
ABSTRACT
BACKGROUND AND OBJECTIVES:
Cardiac surgical interventions for children with trisomy 18 and trisomy 13 remain controversial, despite growing evidence that definitive cardiac repair prolongs survival. Understanding quality of life for survivors and their families therefore becomes crucial. Study objective was to generate a descriptive summary of parental perspectives on quality of life, family impact, functional status, and hopes for children with trisomy 18 and trisomy 13 who have undergone heart surgery.METHODS:
A concurrent mixed method approach utilising PedsQL™ 4.0 Generic Core Parent Report for Toddlers or the PedsQL™ Infant Scale, PedsQL™ 2.0 Family Impact Module, Functional Status Scale, quality of life visual analogue scale, and narrative responses for 10 children whose families travelled out of state to access cardiac surgery denied to them in their home state due to genetic diagnoses.RESULTS:
Parents rated their child's quality of life as 80/100, and their own quality of life as 78/100 using validated scales. Functional status was rated 11 by parents and 11.6 by providers (correlation 0.89). On quality of life visual analogue scale, all parents rated their child's quality of life as "high" with mean response 92.7/100. Parental hopes were informed by realistic perspective on prognosis while striving to ensure their children had access to reaching their full potential. Qualitative analysis revealed a profound sense of the child's relationality and valued life meaning.CONCLUSION:
Understanding parental motivations and perceptions on the child's quality of life has potential to inform care teams in considering cardiac interventions for children with trisomy 18 and trisomy 13.Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Padres
/
Psicometría
/
Calidad de Vida
/
Síndrome de la Trisomía 13
/
Síndrome de la Trisomía 18
Tipo de estudio:
Observational_studies
/
Prognostic_studies
/
Qualitative_research
Límite:
Child, preschool
/
Female
/
Humans
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Infant
/
Male
País/Región como asunto:
America do norte
Idioma:
En
Revista:
Cardiol Young
Asunto de la revista:
ANGIOLOGIA
/
CARDIOLOGIA
/
PEDIATRIA
Año:
2020
Tipo del documento:
Article
País de afiliación:
Estados Unidos