ABSTRACT
Children with congenital or acquired craniofacial conditions often have complex medical and surgical healthcare needs. To provide holistic care to this unique pediatric population, we must seek methods to address the psychosocial needs of children living with a craniofacial difference. Our multidisciplinary craniofacial team concluded our second-year participating in overnight summer camps for our patients with cleft-craniofacial conditions. We worked with 2 different organizations to host the camps each year. Over the course of 2 years, we enrolled more than 100 children, 7-15 years of age, in 1-week, overnight camp experiences. Campers participated in activities to promote team building, self-esteem, confidence, and social awareness. We share the perspectives of the campers and their parents, the camp staff, and the craniofacial team members.
Subject(s)
Craniofacial Abnormalities/surgery , Leisure Activities , Plastic Surgery Procedures/methods , Adolescent , Child , Female , Humans , Male , Social WorkABSTRACT
OBJECTIVE: The purpose of this study was to document the experience of patients and parents of patients who had recently undergone LeFort III midface distraction using an external halo-based device. DESIGN: Cross-sectional study. SETTING: A craniofacial center in a pediatric tertiary care medical center. SUBJECTS: Eight children who had undergone midface distraction within 1 year of the interview and their caregivers. INTERVENTION: Semi-structured interview. MAIN OUTCOME MEASURE: Transcripts of the interviews were rendered anonymous and analyzed by our multi-disciplinary team. Consistent themes in the subjects' experience during and after midface distraction were identified. RESULTS: (1) Family participation in the decision to undergo distraction and pre-operative preparation was recognized as valuable, but parents identified that there are inherent limitations; (2) home-care tasks seemed daunting pre-operatively but were easier than expected; (3) discomfort, sleeping, and interaction with peers were considered well accommodated, but feeding was challenging; (4) individualized pre-operative plans for community support was important; (5) parents and patients were impressed by the change in appearance, specifically in the peri-orbital region; (6) access to team members and to parents of patients who had participated in the distraction process was invaluable. CONCLUSION: External midface distraction is a valuable clinical technique, but requires intensive preparation and support from a multi-disciplinary team. We provide suggestions for consideration by centers initiating and refining patient care plans for this surgery.
Subject(s)
Craniofacial Abnormalities/surgery , Osteogenesis, Distraction , Osteotomy, Le Fort , Activities of Daily Living , Child , Child, Preschool , Craniofacial Abnormalities/psychology , Eating , Female , Humans , Male , Osteogenesis, Distraction/adverse effects , Osteogenesis, Distraction/instrumentation , Osteogenesis, Distraction/psychology , Osteotomy, Le Fort/adverse effects , Parents/psychology , Professional-Patient Relations , Psychology, ChildABSTRACT
BACKGROUND: Little is known about community orthodontists' previous training in, experience with, or receptivity to caring for children with craniofacial disorders. OBJECTIVES: (1) To characterize the current level of participation by Washington state orthodontists in craniofacial care; and (2) to identify factors that promote or impede community orthodontists' involvement in caring for children with craniofacial conditions. DESIGN: Mail survey. METHODS: A 26-item questionnaire was designed and mailed to all active orthodontists in Washington state (N = 230). Question topics included practice characteristics, training and experience with craniofacial conditions, concerns related to public and private insurance, and communication with craniofacial teams. RESULTS: Of eligible respondents, 68% completed the survey. Most orthodontists' patient panels were made up of patients who either have private insurance or pay cash for services. On average, 2% of respondents' patients were Medicaid beneficiaries. Only 20% of respondents had seen more than three patients with cleft lip and/or palate in the past 3 years. Although a minority of orthodontists receive referrals from (27%) or are affiliated with (11%) craniofacial teams, most orthodontists perceived craniofacial care positively and were interested to learn more about craniofacial care and to accept additional patients with these conditions. CONCLUSIONS: Results of this survey can inform potential strategies to increase access to orthodontic care for children with craniofacial disorders. These would include developing an organized training, referral, and communication system between community orthodontists and state craniofacial teams and considering a case-management approach to facilitate this process.
