Prioritizing family-centered developmental care: insights from parents of children with critical congenital heart disease: a qualitative study.

ABSTRACT: As survivors of early cardiac surgery are at high risk of neurodevelopmental impairments, systematic health observations of children with critical congenital heart disease (CCHD) throughout childhood are recommended to enable early diagnosis and offer interventions to optimize neurodevelopment. A qualitative study using thematic analysis was performed to explore parents' concerns, experiences, and needs regarding the development and received developmental care of their child (0-10 years) during hospital admission and beyond. Data were collected using semi-structured online interviews with 20 parents of children with CCHD. Four major themes were identified: (1) "impact of diagnosis and disease on the family-system," (2) "parental concerns from diagnoses and beyond," (3) "the need for inform

SUBMITTER: Sprong MCA 

PROVIDER: S-EPMC11322194 | biostudies-literature | 2024 Sep

REPOSITORIES: biostudies-literature