Navigating uncertainty or preparing for the future: A qualitative study of parental experiences with congenital lung malformations.

INTRODUCTION

The incidence of congenital lung malformations (CLM) has increased with improving prenatal imaging. Counseling parents with a prenatal diagnosis of CLM involves significant uncertainty and conflicting opinions regarding postnatal management. This study investigated families' experiences of receiving a CLM diagnosis.

METHODS

A validated survey (PedsQL Healthcare satisfaction) and CLM-specific questionnaire were distributed via social media to parents of children with CLMs. Demographics, diagnostics and treatment, and experiences with prenatal counseling were described. Multivariable regression assessed satisfaction and patient, diagnostic, treatment, and provider factors.

RESULTS

We surveyed 148 parents; 96% of children were diagnosed prenatally. Most participants were female (97.30%), white (77.03%), college educated (89.86%), and United States-based (68.24%). Of those diagnosed prenatally, 71.32%, 55.94%, 18.18% met with a maternal fetal medicine specialist, pediatric surgeon, or neonatologist respectively. Over half were diagnosed with CPAM and more than one-third experienced a change in their diagnosis. Overall parental satisfaction with the amount of information was high (87% "always"/"almost always" happy). Having a child managed surgically was associated with greater satisfaction (aOR = 9.57 p = 0.04) while use of social media with associated with lower satisfaction (aOR = 0.36 p = 0.03). Having a college education was associated with greater satisfaction (aOR = 5.55 p = 0.02) while residing outside the United States was associated with lower satisfaction (aOR = 0.38 p = 0.02). Residing outside the United States and a change in diagnosis were associated with lower satisfaction (aOR = 0.25 p = 0.01 & aOR = 0.38 p = 0.04, respectively).

CONCLUSION

Understanding the factors that shape parents' experience with their child's diagnosis may enhance the quality of providers' prenatal counseling and postnatal discussions.