Kayla V Hamilton1,2, Kelly E Ormond1, Tia Moscarello3, Janine S Bruce4, Sylvia Bereknyei Merrell5, Kay W Chang6, Jonathan A Bernstein7,8. 1. 1 Department of Genetics, Stanford, Stanford University School of Medicine, CA, USA. 2. Hamilton is now with Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA. 3. 2 Department of Cardiovascular Medicine, Stanford Health Care, Stanford, CA, USA. 4. 3 Department of Pediatrics, Stanford University School of Medicine, CA, USA. 5. 4 Department of Surgery, Stanford University School of Medicine, CA, USA. 6. 5 Department of Otolaryngology, Stanford University School of Medicine, CA, USA. 7. 6 Department of Pediatrics, Division of Medical Genetics, Stanford University School of Medicine, CA, USA. 8. 7 Stanford Children's Health-Lucile Packard Children's Hospital, Stanford, CA, USA.
Abstract
OBJECTIVE: This study explores the experiences of adolescents and young adults with craniofacial microsomia, including the impact of growing up with this craniofacial condition on daily life and sense of self. The results may guide future research on optimally supporting individuals with craniofacial microsomia during this critical life phase. DESIGN AND SETTING: Participants were recruited through a craniofacial center, online patient support groups, and social media sites. Eleven individual semistructured interviews with participants between 12 and 22 years old were conducted by a single interviewer, transcribed, iteratively coded, and thematically analyzed. RESULTS: Five themes were evident in the data: (1) impact on personal growth and character development, (2) negative psychosocial impact, (3) deciding to hide or reveal the condition, (4) desire to make personal surgical decisions, and (5) struggles with hearing loss. CONCLUSIONS: We identified both medical and psychosocial concerns prevalent among adolescents with craniofacial microsomia. Although adolescents with craniofacial microsomia exhibit considerable resilience, the challenges they face impact their sense of self and should be addressed through psychosocial support and counseling. Further research should investigate the potential benefit of the wider use of hearing aids, as well as the involvement of patients in decision-making about reconstructive ear surgery.
OBJECTIVE: This study explores the experiences of adolescents and young adults with craniofacial microsomia, including the impact of growing up with this craniofacial condition on daily life and sense of self. The results may guide future research on optimally supporting individuals with craniofacial microsomia during this critical life phase. DESIGN AND SETTING:Participants were recruited through a craniofacial center, online patient support groups, and social media sites. Eleven individual semistructured interviews with participants between 12 and 22 years old were conducted by a single interviewer, transcribed, iteratively coded, and thematically analyzed. RESULTS: Five themes were evident in the data: (1) impact on personal growth and character development, (2) negative psychosocial impact, (3) deciding to hide or reveal the condition, (4) desire to make personal surgical decisions, and (5) struggles with hearing loss. CONCLUSIONS: We identified both medical and psychosocial concerns prevalent among adolescents with craniofacial microsomia. Although adolescents with craniofacial microsomia exhibit considerable resilience, the challenges they face impact their sense of self and should be addressed through psychosocial support and counseling. Further research should investigate the potential benefit of the wider use of hearing aids, as well as the involvement of patients in decision-making about reconstructive ear surgery.
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