Parents' quality of life and health after treatment decision for a fetus with severe congenital heart defect.
J Pediatr Nurs
; 70: 20-25, 2023.
Article
em En
| MEDLINE
| ID: mdl-36791586
ABSTRACT
PURPOSE:
This exploratory study examines differences in parents' quality of life by treatment decision and the child's survival outcome in the context of life-threatening congenital heart disease (CHD). DESIGN ANDMETHODS:
Parents of a fetus or neonate diagnosed with severe CHD enrolled in the observational control group of a clinical trial (NCT04437069) and completed quality of life (i.e., contact with clinicians, social support, partner relationship, state of mind), mental and physical health survey measures. Comparisons were made between parents who chose comfort-directed care or surgery and between those whose child did and did not survive.RESULTS:
Parents who chose surgery and their child did not survive reported the most contact with their clinicians. Parents who chose comfort-directed care reported lower social support than parents who chose surgery and their child did not survive as well as poorer state of mind compared to parents who chose surgery.CONCLUSIONS:
Some aspects of parents' quality of life differed based on their treatment decision. Parents who choose comfort-directed care are vulnerable to some negative outcomes. PRACTICE IMPLICATIONS Decision support tools and bereavement resources to assist parents with making and coping with a complex treatment decision is important for clinical care.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Cardiopatias Congênitas
Tipo de estudo:
Clinical_trials
/
Diagnostic_studies
/
Observational_studies
/
Prognostic_studies
Aspecto:
Patient_preference
Limite:
Child
/
Humans
/
Newborn
Idioma:
En
Revista:
J Pediatr Nurs
Ano de publicação:
2023
Tipo de documento:
Article