Wiley Susan, Meinzen-Derr Jareen, Hunter Lisa, Hudock Rebekah, Murphy Dora, Bentley Katie, Williams Tanishia
Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH.
Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH.
J Am Acad Audiol. 2018 May;29(5):378-388. doi: 10.3766/jaaa.16139.
There is a significant lack of evidence guiding our understanding of the needs of families of children who are deaf/hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD). Much of our current knowledge is founded in case report studies with very small numbers of children with the dual diagnosis.
The purpose of this study was to gain an understanding of the factors relating to caregiver stress and needs (i.e., supports and interventions) in families of children who are Deaf/HH with ASD.
Comparison groups of families of children who were Deaf/HH, families with a hearing child with ASD, and families of children who were Deaf/HH with ASD were administered standardized questionnaires of stress with brief qualitative questionnaires focusing on family-identified needs.
Six families of children with the dual diagnosis, four families of children who were Deaf/HH, and three families of children with ASD.
Surveys included demographic and support questionnaires, the Parenting Stress Index (PSI), the Pediatric Hearing Impairment Caregiver Experience, and a qualitative questionnaire.
Families of children who were Deaf/HH with ASD had a higher median total stress score on the PSI as compared to families of children who were Deaf/HH only (58.5 versus 41.5, respectively; p = 0.02) and higher Child Domain scores (60 versus 43, respectively; p = 0.02), indicating higher levels of stress in families of children with the dual diagnosis. The families of children who were Deaf/HH with ASD reported similar levels of stress as families of children with ASD.
Families of children who are Deaf/HH with an ASD experience stress and describe similar needs and priorities as families of hearing children with ASD. This suggests the needs related to having an autism spectrum disorder are of high priority in families of children with the dual diagnosis.
在引导我们理解患有自闭症谱系障碍（ASD）的失聪/听力障碍（Deaf/HH）儿童家庭需求方面，存在显著的证据不足。我们目前的许多知识都建立在对极少数患有双重诊断的儿童的病例报告研究基础上。
本研究的目的是了解与患有ASD的Deaf/HH儿童家庭中照顾者压力及需求（即支持和干预措施）相关的因素。
对Deaf/HH儿童家庭、有听力正常但患有ASD儿童的家庭以及患有ASD的Deaf/HH儿童家庭这几组对照家庭，发放标准化压力问卷，并附上聚焦于家庭确定需求的简短定性问卷。
六个患有双重诊断的儿童家庭、四个Deaf/HH儿童家庭以及三个患有ASD的儿童家庭。
调查包括人口统计学和支持问卷、育儿压力指数（PSI）、儿科听力障碍照顾者体验问卷以及一份定性问卷。
与仅为Deaf/HH儿童的家庭相比，患有ASD的Deaf/HH儿童家庭在PSI上的总压力得分中位数更高（分别为58.5和41.5；p = 0.02），儿童领域得分也更高（分别为60和43；p = 0.02），这表明患有双重诊断的儿童家庭压力水平更高。患有ASD的Deaf/HH儿童家庭报告的压力水平与患有ASD的听力正常儿童家庭相似。
患有ASD的Deaf/HH儿童家庭会经历压力，并且与听力正常但患有ASD的儿童家庭有着相似的需求和优先事项。这表明在患有双重诊断的儿童家庭中，与自闭症谱系障碍相关的需求是高度优先的。
