Pilot Study On The Status And Associated Factors With Autism Awareness, Health Service Utilization

Objectives: With obvious increasing of prevalence of autism, problems broughtby it were paid more and more attention. This study’s objectives were to estimate theproportion of people in the community who could correctly recognize Autism,describe the attitudes towards various treatments for Autism, and identify factorsassociated with autism recognition. At the same time, the aims of this study were alsoto determine the health expenses incurred by families with autistic children and thoseexpenses related to total household income and expenditures. Finally, we will find theissues of health service process and provide the scientific basis for improving autismhealth service system.Methods: Random cluster sampling method was used and4groups ofpopulation were recruited in the study for the investigation of autism informationawareness and associated factors, including5240community residents,473primaryhealth care doctors,564education workers and311parents with autistic children.Questionnaire, named ‘The relative information awareness about children Autism’was conducted through field survey by trained staffs.9aspects were conducted toknow of the Autism awareness levels among the4groups, including recognition toAutism, general information, etiology and onset age, disease burden, attitude tovisiting clinic and consultation, interference, prognosis and autism informationresource, etc. On the other hand, the survey on the status of rehabilitation and healthservice utilization for autistic children was carried out by mailing and face to faceinterview method. The participants included365families with autistic children fromChildren Development and Behavior Research Center(CDBRC), Harbin MedicalUniversity, China. The contents included the investigation of visiting clinic, treatment status, health expenditure, family burden and family foster, etc.Results: In the study of the relative autism information awareness and associatedfactors, the best cognition to autism was among education workers with70.3%proportion, the less was among primary health care doctors (53.7%).15.5%participatorsthought autism as rare disease. There was misunderstanding among all people.Improper education style was thought as the factor to cause autism among communityresidents, education workers and primary health care doctors, and the highestproportion was in primary health care doctors (68.7%). Estimate to autism severelevel was higher among autism parents, and33.3%of parents thought autism will becured. Most of investigated people were positive to visiting clinic, but68.1%chosepsychological department.77.5%of autism parents thought rehabilitation and trainingwere effective, much more than others. Psychological treatment was thought aseffective method more among community residents and primary health care doctors.The main information resource among4groups was from TV programs.In the study about autism health service utilizing, the mean age for parents tofind the children behavior disorders were30.24months (2.52years old) and the meanage for the first visiting clinic was38.09months (3.17years old). And the internalwas averagely10.05months. The mean age for being diagnosed for autism was44.86months (3.73years old) and the internal of the first visiting clinic and being diagnosedwas6.77months. The interval of finding the behavior disorders and visiting clinicwas related to the age of finding disorders and the settings of visiting where parentsknew. The interval of visiting and diagnosis for autism was related to the numbers ofsettings of visiting clinic. In the investigation of visiting clinic and treatment, Themean yearly health expenses was16,700RMB, including rehabilitation,transportation, accommodation, visiting clinic, consultation, treatment and others,which accounted for81.02%in yearly family income, and49.75%in yearly familyexpenses. The family expenses were more than family income in25.6%of families, and especially in countryside than town (21.6%in town vs34.3%in countryside).There was other persons to help for taking care of autism children in46.0%families.There were baby sitters hired in9.3%of families, even though, parents’ job was stillaffected with54.6%in mother, and26.0%in father.Conclusions: In the study, we found that there were different for Autismrecognition among community residents, parents with Autism children, primary healthcare doctors, preschool teachers and special education workers. Among the4groups,quite a few people didn’t know the relative knowledge of the symptoms, characters,visiting clinic and treatment about autism. There was much misunderstanding,especially among primary health care doctors. Community education and trainingshould be conducted to improve the autism knowledge, and develop the Three-levelprevention. From the autism health service utilization survey, we can know that mostof parents can find the behavior disorders in infant period, however, delay of visitingclinic and being diagnosed existed and there were multi-settings and multi-region forvisiting clinic. During visiting clinic and being diagnosed, most of families carried theheavy foster and economical burden. The fact of health service resource mentioned usthat health service system should be improved as fast as we can and early screeningand diagnosis should be made. At the same time, more effective health service andsociety support should be provided for Autism children and families.