Parental Reports of Intervention Services and Prevalence of Teasing in a Multinational Craniofacial Microsomia Pediatric Study.
Parental Reports of Intervention Services and Prevalence of Teasing in a Multinational Craniofacial Microsomia Pediatric Study.
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DOI：
10.1097/scs.0000000000007999
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发表时间：
2021-11-01
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患有颅面微小症 (CFM) 的儿童面临更大的教育和社会问题风险。本研究描述了多国 CFM 儿童群体中的干预服务和戏弄频率。对美国和南美洲 3-18 岁 CFM 儿童的照顾者进行了问卷调查。从医疗图表和照片中收集了更多信息。参与者 (N = 169) 平均年龄为 10.1 ± 6.2 岁，主要为男性 (60%)，来自美国 (46%) 或哥伦比亚 (32%)。大多数参与者有小耳畸形和下颌发育不全（70%）。他们经常有单侧（71%）或双侧（19%）听力损失，53% 使用助听器。在美国，为 48% 的在校学生提供了特殊教育服务；然而，类似的服务在南美洲很少见（4%），这反映了教育系统的差异。美国 (80%) 获得任何干预服务的比例高于南美洲 (48%)。护理人员报告，儿童平均年龄为 4.4 ± 1.9 岁，表现出诊断意识。 41% 的儿童报告当前或过去曾遭受过戏弄，平均年龄为 6.0 ± 2.4 岁，最常发生在学校 (86%)。由于一半的美国参与者接受了发展和学术干预，提供者应筛选需求并促进获得服务。鉴于四岁时的诊断意识和六岁时的嘲笑，鼓励提供者评估社会心理问题并在治疗早期与资源联系起来。
Children with craniofacial microsomia (CFM) are at increased risk for educational and social concerns. This study describes intervention services and frequency of teasing in a multinational population of children with CFM. Caregivers of children with CFM ages 3-18 years in the US and South America were administered a questionnaire. Additional information was gathered from medical charts and photographs. Participants (N = 169) had an average age of 10.1 ± 6.2 years, were primarily male (60%), and from the US (46%) or Colombia (32%). Most participants had microtia and mandibular hypoplasia (70%). They often had unilateral (71%) or bilateral (19%) hearing loss and 53% used a hearing aid. In the US, special education services were provided for 48% of participants enrolled in school; however, similar services were rare (4%) in South America and reflect differences in education systems. Access to any intervention service was higher in the US (80%) than in South America (48%). Caregivers reported children showed diagnosis awareness by an average age of 4.4 ± 1.9 years. Current or past teasing was reported in 41% of the children, starting at a mean age of 6.0 ± 2.4 years, and most often took place at school (86%). As half of the US participants received developmental and academic interventions, providers should screen for needs and facilitate access to services. Given diagnosis awareness at age four and teasing at age six, providers are encouraged to assess for psychosocial concerns and link to resources early in treatment.