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

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

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Publication Details

Journal
The Cleft Palate-Craniofacial Journal
Published
2025-01-09
DOI
https://doi.org/10.1177/10556656241305889
Citations
2
Primary Topic
Grief, Bereavement, and Mental Health
Type
article
Field-Weighted Citation Impact
4.61
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article

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

Alyssa K. Choi, Amanda A. Gosman, Vanessa L. Malcarne, Viridiana J. Tapia et al.
2 citations
The Cleft Palate-Craniofacial Journal
Grief, Bereavement, and Mental Health
4.61
article

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

Alyssa K. Choi, Amanda A. Gosman, Vanessa L. Malcarne, Viridiana J. Tapia, Julia H. Drizin, Chelsea S. Rapoport, Caitlyn C. Belza, Jessica D. Blum, Sydney Olfus, Megan Korhummel, Josseline Herrera Eguizabal
article en
2 citations

Abstract

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

The Cleft Palate-Craniofacial JournalVol. 63(2)
San Diego State University (US), UC San Diego Health System (US), University of California San Diego (US), Rady Children's Hospital-San Diego (US)
Openalex Percentile: Top 9%
Grief, Bereavement, and Mental Health
4.61
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