Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice
Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice
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DOI：
10.1111/jpc.13157
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发表时间：
2016-05-01
影响因子：
1.7
通讯作者：
Hiscock, Harriet
中科院分区：
文献类型：
--
作者：
Hennel, Sabine;Coates, Cathy;Hiscock, Harriet
在诊断自闭症时，父母的信息需求和临床医生的实践之间的一致性是未知的，但可能会影响家庭的管理和调整。我们的目的是比较家长的经验和偏好与儿科医生的报告（一）诊断交付和（二）信息在诊断和识别类型和有用的资源访问家庭post-diagnosis. MethodsThe设计用于研究是家长和儿科医生的调查。参与者是1.5 - 18岁儿童的父母，他们在2010年1月1日至2012年9月30日期间被诊断患有自闭症，他们的儿科医生是澳大利亚儿科研究网络的成员。研究设计的定量和定性问题的诊断交付和诊断信息（书面和口头与既不）和家长认为的重要性和危害的信息访问后diagnosis. ResultsPaediatricians（53/198（27%））确定了1127个符合条件的家庭，其中404（36%）参加。父母比儿科医生更有可能报告获得足够的时间来讨论诊断（71%对51%）。父母（98%）认为有关访问专职医疗人员和诊断的意义的信息最重要，但儿科医生很少提供书面或口头信息（专职医疗：22%;诊断：42%）。诊断后，专职医疗是最重要的信息来源（83%）。有害的资源传达无助或非证据为基础的治疗，但很少有父母（14%）reported this. ConclusionsParents想要更多的信息比可以传达在一个单一的诊断咨询。制定一个有书面材料的量身定制的自闭症行动计划可以提高父母对儿童自闭症诊断的理解和满意度。
AimConcurrence between parents' information needs and clinicians' practice when diagnosing autism is unknown but may influence families' uptake of management and adjustment. We aimed to compare parents' experience and preferences with paediatrician report of (i) diagnosis delivery and (ii) information given at diagnosis and identify types and usefulness of resources accessed by families post-diagnosis.MethodsThe design used for the study are parent and paediatrician surveys. Participants are parents of children aged 1.5-18years, diagnosed with autism between 01 January 2010 and 30 September 2012 and their paediatricians who are members of the Australian Paediatric Research Network. Study-designed quantitative and qualitative questions about diagnosis delivery and information given at diagnosis (written and spoken vs. neither) and parent perceived importance and harms of information accessed post-diagnosis.ResultsPaediatricians (53/198 (27%)) identified 1127 eligible families, of whom 404 (36%) participated. Parents were more likely to report receiving adequate time to discuss diagnosis than paediatricians (71 vs. 51%). Parents (98%) rated information about accessing allied health professionals and the meaning of diagnosis as most important, yet paediatricians offered written or spoken information about each infrequently (allied health: 22%; diagnosis: 42%). Post-diagnosis, allied health was the most important source of information (83%). Harmful resources conveyed helplessness or non-evidenced-based therapies, but few parents (14%) reported this.ConclusionsParents want more information than can be conveyed in a single diagnostic consultation. Developing a tailored autism action plan' with written materials could improve parents' understanding of and satisfaction with children's autism diagnoses.