The Care Burden And Quality Of Life In Major Caregivers Of Preschool Children With Autism

ObjectiveTo evaluate aspects of the care burden and quality of life in the major caergivers (mother or father) of preschool children with autism.MethodsThe major caregivers in the autism families and in the paired normal families were sellected as the study objectes. Basic date were collected with self-made questionnaire; symptoms of autism in children were measured with Autism Behavior Checklist (ABC), which grouped autism symptoms into five dimensions, include sensory, relating, body and object use, language, and social and self-help; care burden were measured with Zarit Caregiver Burden Interview (ZBI), which grouped the care burden into five dimensions, include sacrifice, loss of control, embarrassment/anger, self-criticism and dependency. Additional, there was a item measured self-feeling of overall care burden; the quality of life were measured with Short Form 36 Health Survey Questionnaire Version 2.0 (SF-36v2), which grouped the quality of life into 8 dimensions, include physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional and mental health. Additional, there was a item reported health transition, and physical health summary and mental health summary could be counted in the basic of norm. ResultsA total of 82 pair core families were selected, father/mother was 9/73 in major caregivers. The total score [case group vs control group= 50.52(14.42)vs 17.46(9.07)]and any dimensions of ZBI were significant higher in autism families than in normal families (all p=0.000). The care burden of major caregiver in autism families and age of child showed a postive correlation, and a nagtive correlation was found between the self-care of autism child and the care burden (R2=0.146, p=0.002). However, the care burden of major caregiver in control group and age of child showed a nagtive correlation (R2=0.052, p=0.039). The physical health summary[case group vs control group=45.07 (11.55) vs 54.52 (5.32)], mental health summary[case group vs control group=26.58 (14.50) vs 50.98 (8.78)], and all dimensions of SF-36v2 were significent lower in autism families than in normal families (all p=0.000), especially in mental health related dimensions. The mental and physical health summary were significant correlate with care burden negatively (all p<0.05), and sacrifice dimension of care burden affect the quality of life most wildly.ConclutionCompared to the control group, the major caregiver of autism fimilies face to heavier care burden, and had lower quality of life. These reasults suggested that specific health programs are needed for these caregivers.