Benefit Finding in Craniofacial Conditions: A Qualitative Analysis of Patient and Parent Perspectives

Abstract

Objective

Craniofacial conditions (CFCs) can be associated with adverse effects on quality of life (QoL). However, few studies have examined perceived benefits related to CFCs. This study described perceived benefits in an international sample of children and adolescents with CFCs and their parents.

Design

Semistructured qualitative interviews were completed in English or Spanish as part of a larger study. Deductive content analysis described and quantified perceived benefits associated with CFCs.

Setting

Interviews were during standard visits at Rady Children's Hospital-San Diego in the USA and the Hospital Infantil de las Californias in Tijuana, Baja California, Mexico.

Participants

Patients were ages 7 to 20 years (n = 32) with CFCs (cleft lip and/or palate, craniosynostosis, microtia, hemifacial microsomia, dermatologic conditions/neurovascular malformations, and trauma-acquired CFC), and parents (n = 71) had children ages 5 months to 23 years with CFCs. Of the total sample, there were 14 patient-parent dyads.

Results

A total of 230 benefits were identified. Of the patients (47%) and parents (73%) who identified at least 1 benefit, themes included personal growth (40%), understanding or helping others facing challenges (25%), social relationships (23%), spiritual or religious beliefs (4%), philanthropy (4%), material or external gains (3%), and personal health (1%).

Conclusions

Patients with CFCs and their parents report multiple positive effects of CFCs on their QoL. These findings indicate that benefit finding is a common experience in this population and may be leveraged by clinicians to help promote positive adjustment to living with a CFC.