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RESEARCH: “The challenge of managing insecurities”: Parents’ experiences with the care for their child with congenital diaphragmatic hernia.

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RESEARCH: “The challenge of managing insecurities”: Parents’ experiences with the care for their child with congenital diaphragmatic hernia.

PURPOSE:

Last decennia remarkable advances have been made in decreasing the mortality rate of children with congenital diaphragmatic hernia (CDH), resulting in a relatively growing patient group with long-term complications and complex care needs. These consequences have a huge impact on the quality of life of both children and their families. To provide practical recommendations for improving the quality of care for this patient group, the present study sought to obtain insights into the experiences and needs of parents with a child with CDH.

DESIGN AND METHODS:

A qualitative study was conducted on the experiences and needs of parents with a child with CDH living in the Netherlands. Data was obtained by means of a discourse analyses of 17 weblogs written by parents and three online focus groups with 8-12 parents per group (n = 29). The data was analysed thematically and structured by using the model of Lawoko ( ) on parental satisfaction with care.

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