基于全面康复视角的残疾儿童照护需求分析

Current Situation Analysis of Care Support Needs in Children with Disabilities:from a Comprehensive Rehabili-tation Perspective

目的调查残疾儿童照护需求并分析相关影响因素。方法2019年12月至2020年1月以及2020年8月至9月,方便抽样方法选取上海市残疾儿童家庭照护者496例。采用残疾儿童照护需求评估工具调查照护需求率及满足程度,应用多元线性回归分析照护需求的相关影响因素。结果总体照护需求率为71.8%,其中,信息支持(83.7%)、精神支持(75.9%)和经济支持(74.1%)较高,替代性服务支持(62.9%)和专业支持(62.2%)处于中等水平。总体照护需求满足程度为39.4%,其中,精神支持(50.8%)、专业支持(45.5%)处于中等水平,替代性服务支持(32.8%)、经济支持(32.3%)和信息支持(30.3%)需求满足程度较低。公共政策满意度越高(B=-3.252,95%CI-5.370~-1.134,P=0.003),视力残疾、言语残疾和未定残(B_(视力残疾)=-12.160,95%CI-21.976~-2.344,P=0.015;B_(言语残疾)=-12.754,95%CI-22.583~-2.925,P=0.011;B_(未定残)=-16.553,95%CI-24.714~-8.392,P<0.001)的照护需求程度更低,家庭角色为母亲(B=9.071,95%CI 4.293~13.848,P<0.001)的需求程度更高。公共政策满意度越高(B=7.392,95%CI 5.523~9.262,P<0.001)、残疾类型为视力、听力和言语残疾(B_(视力残疾)=8.612,95%CI 0.081~17.144,P=0.048;B_(听力残疾)=8.686,95%CI 1.920~15.451,P=0.012;B_(言语残疾)=9.515,95%CI 1.184~17.846,P=0.025)、社会融入阻碍度越低(B=1.932,95%CI 0.457~3.408,P=0.010)以及日均照护时长越短(B=-4.123,95%CI-6.247~-1.999,P<0.001)的照护需求满足程度更高。结论残疾儿童照护者的照护需求是多元的,其中信息支持的需求率最高,而满足程度最低。不同残疾类型儿童、家庭角色及照护时长和环境特征下的照护需求程度及满足程度均存在一定差异。

Objective To investigate the care needs and influencing factors for caregivers of children with disabilities.Methods From December,2019 to January,2020,and August to September,2020,a total of 496 family caregivers of children with disabilities were surveyed in Shanghai.The Care Needs Assessment Tool for Children with Disabilities was used to measure the care needs rates and satisfaction,and multiple linear regression was performed to analyze the related factors.Results The rate of total need was 71.8%,which was high in the information support(83.7%),spiritual support(75.9%)and financial support(74.1%),and was at an intermediate level in alternative service support(62.9%)and professional support(62.2%).The satisfaction of total need was 39.4%,which was at a intermediate level in the spiritual support(50.8%)and professional support(45.5%),and was at a low level in alternative service support(32.8%),financial support(32.3%)and information support(30.3%).The caregivers needed less support for thoses with higher public policy satisfaction(B=-3.252,95%CI-5.370 to-1.134,P=0.003)and the children with vision and speech disability,and undetermined disability(B_(vision disability)=-12.160,95%CI-21.976 to-2.344,P=0.015;B_(speech disability)=-12.754,95%CI-22.583 to-2.925,P=0.011;Bundetermined disability=-16.553,95%CI-24.714 to-8.392,P<0.001),while mothers(B=9.071,95%CI 4.293 to 13.848,P<0.001)needed more support than grandparents.The caregivers with higher public policy satisfaction(B=7.392,95%CI 5.523 to 9.262,P<0.001),the children with vision disability,hearing disability and speech disability(Bvision disability=8.612,95%CI 0.081 to 17.144,P=0.048;B_(hearing disability)=8.686,95%CI 1.920 to 15.451,P=0.012;B_(speech disability)=9.515,95%CI 1.184 to 17.846,P=0.025),lower barriers to social inclusion(B=1.932,95%CI 0.457 to 3.408,P=0.010)and shorter average daily care hours(B=-4.123,95%CI-6.247 to-1.999,P<0.001)were more satisfactory for support.Conclusion The care needs of children with disabilities are diverse,with the highest rate of need for information support and the lowest level of satisfaction.There is some variation in the care needs of children with different types of disabilities,family roles,average daily care hours and social environment characteristics.