基于全面康复视角的残疾儿童照护需求分析

doi:10.3969/j.issn.1006-9771.2021.10.001

《中国康复理论与实践》 ›› 2021, Vol. 27 ›› Issue (10): 1117-1126.doi: 10.3969/j.issn.1006-9771.2021.10.001

• 专题残疾儿童康复与照护研究 • 上一篇下一篇

基于全面康复视角的残疾儿童照护需求分析

郑红颖^1,²,孙梅^1,^2,³(),吕军^1,^2,³,邱服冰⁴,李安巧^5,⁶,夏聪^1,²

1.复旦大学公共卫生学院,上海市 200032
2.复旦大学中国残疾问题研究中心,上海市 200032
3.国家卫生健康委员会卫生技术评估重点实验室（复旦大学）,上海市 200032
4.深圳大学体育部体育与健康科学研究中心,广东深圳市 518060
5.中国ICF研究院,山东潍坊市 261000
6.世界卫生组织国际分类家族中国合作中心,北京市 100068

收稿日期:2021-08-20 修回日期:2021-09-17 出版日期:2021-10-25 发布日期:2021-10-29
通讯作者: 孙梅 E-mail:sunmei@fudan.edu.cn
作者简介:郑红颖(1994-),女,汉族,浙江宁波市人,博士研究生,主要研究方向：健康服务政策与治理。
基金资助:
国家社会科学基金重大项目(17ZDA078);国家自然科学基金面上项目(71774030);上海市哲学社会科学规划一般课题(2018BGL005)

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

ZHENG Hong-ying^1,²,SUN Mei^1,^2,³(),LÜ Jun^1,^2,³,QIU Fu-bing⁴,LI An-qiao^5,⁶,XIA Cong^1,²

1. School of Public Health, Fudan University, Shanghai 200032, China
2. China Research Center on Disability, Fudan University, Shanghai 200032, China
3. National Health Commission Key Laboratory of Health Technology Assessment (Fudan University), Shanghai 200032, China
4. Center of Physical Education, Sport and Health Sciences, Department of Physical Education, Shenzhen University, Shenzhen, Guangdong 518060, China
5. China Academy of ICF, Weifang, Shandong 261000, China
6. WHO-FIC Collaborating Center in China, Beijing 100068, China

Received:2021-08-20 Revised:2021-09-17 Published:2021-10-25 Online:2021-10-29
Contact: SUN Mei E-mail:sunmei@fudan.edu.cn
Supported by:
National Social Science Foundation of China (Major)(17ZDA078);National Natural Science Foundation of China (General)(71774030);Shanghai Philosophy and Social Science Project(2018BGL005)

摘要/Abstract

摘要：

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。

关键词: 残疾儿童, 照护者, 照护需求, 全面康复

Abstract:

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; B_{undetermined 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 (B_{vision 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.

Key words: children with disabilities, caregivers, care support needs, comprehensive rehabilitation

中图分类号:

郑红颖,孙梅,吕军,邱服冰,李安巧,夏聪. 基于全面康复视角的残疾儿童照护需求分析[J]. 《中国康复理论与实践》, 2021, 27(10): 1117-1126.

ZHENG Hong-ying,SUN Mei,LÜ Jun,QIU Fu-bing,LI An-qiao,XIA Cong. Current Situation Analysis of Care Support Needs in Children with Disabilities: from a Comprehensive Rehabilitation Perspective[J]. 《Chinese Journal of Rehabilitation Theory and Practice》, 2021, 27(10): 1117-1126.

图/表 6

表1

图1

表2

残疾儿童照护需求率状况(%,n = 496)"

维度	变量		替代性服务支持	专业支持	经济支持	精神支持	信息支持	总体需求率
残疾儿童	性别	男	65.9	63.3	74.6	76.5	85.0	73.1
		女	58.0	60.5	73.3	74.9	81.7	69.9
	年龄(岁)	0~< 6	60.6	60.4	73.2	75.9	83.4	70.8
		6~< 12	63.0	62.6	73.2	74.4	82.9	71.3
		12~18	75.0	71.2	81.9	80.8	88.1	79.3
	残疾类型	视力残疾	57.0	57.1	73.8	59.4	68.2	63.1
		听力残疾	58.3	73.4	84.4	79.2	91.4	78.3
		言语残疾	50.8	53.6	58.8	70.6	76.6	62.4
		肢体残疾	63.0	67.1	80.2	77.2	88.0	75.4
		智力残疾	70.8	59.8	73.0	77.0	77.8	71.1
		精神残疾	72.5	60.2	75.7	86.9	89.1	76.3
		多重残疾	75.5	68.0	72.6	81.9	88.0	77.0
		未定残	50.0	45.4	58.4	63.9	73.9	58.2
照护者	家庭角色	父亲	63.5	64.4	71.6	74.5	81.3	71.2
		母亲	67.3	65.9	77.6	79.7	87.0	75.5
		祖辈	53.8	53.4	69.0	69.5	78.9	65.0
	年龄(岁)	≤ 40	64.8	63.7	73.6	76.9	84.0	72.7
		> 40~< 60	64.2	63.8	76.3	76.6	85.4	73.3
		≥ 60	56.0	55.6	72.5	71.8	80.3	67.3
	日均照护时长(h)	≤ 5	67.9	67.7	74.6	77.9	84.2	74.6
		> 5~< 10	55.6	61.4	71.6	74.0	85.3	70.1
		≥10	62.4	58.5	75.1	75.2	82.7	70.6
环境	家庭规模	≤ 3人	65.7	66.1	77.0	77.1	87.6	74.9
		4~5人	62.3	61.7	73.5	76.0	83.7	71.5
		≥ 6人	59.3	56.0	70.1	73.3	76.0	66.8
	家庭人均月收入(元)	< 5000	64.2	62.1	76.8	75.2	83.2	72.3
		5000~< 10000	61.5	62.9	75.2	74.2	86.1	72.2
		≥ 10000	62.2	61.5	69.0	78.5	81.4	70.6
	公共政策	不满意	73.9	67.1	77.4	80.4	86.2	76.7
		较少满意	72.4	64.3	73.6	86.4	86.8	76.3
		一般满意	61.5	60.2	77.1	73.1	83.9	71.2
		较多满意	58.8	65.0	70.6	75.8	81.8	70.9
		非常满意	44.8	59.5	56.7	65.8	78.5	62.2
	社会融入	严重阻碍	79.3	65.9	80.0	89.8	89.0	80.0
		部分阻碍	62.9	59.6	73.3	72.5	88.9	71.5
		没有帮助	61.1	56.0	69.7	70.8	72.2	65.6
		较少帮助	60.7	64.2	75.0	77.5	81.7	72.0
		很大帮助	60.4	70.0	76.3	79.1	85.2	74.8

表2

表3

残疾儿童照护需求满足程度状况(%,n = 496)"

维度	变量		替代性服务支持	专业支持	经济支持	精神支持	信息支持	总体满足程度
残疾儿童	性别	男	34.2	45.9	31.6	50.4	30.4	38.8
		女	33.0	47.9	34.8	53.8	31.6	40.4
	年龄(岁)	0~< 6	36.0	47.2	32.7	51.9	31.5	40.1
		6~< 12	32.5	47.7	32.4	53.2	30.6	39.8
		12~18	24.9	40.0	34.9	45.4	27.8	33.9
	残疾类型	视力残疾	50.5	57.1	32.3	64.9	43.4	47.5
		听力残疾	44.4	62.8	47.8	55.4	36.2	49.6
		言语残疾	35.2	55.1	38.1	56.8	32.6	46.2
		肢体残疾	33.5	46.2	35.1	55.5	32.4	40.4
		智力残疾	23.0	41.2	26.9	45.7	26.3	33.0
		精神残疾	33.9	36.9	22.3	45.1	26.2	33.2
		多重残疾	28.7	40.4	33.4	43.8	26.5	34.3
		未定残	28.3	39.9	22.4	50.2	27.0	34.0
照护者	家庭角色	父亲	42.3	51.6	38.1	57.2	36.0	45.1
		母亲	33.6	44.2	30.9	47.4	29.3	37.1
		祖辈	27.6	48.1	32.9	56.3	30.2	39.8
	年龄(岁)	≤ 40	39.5	48.5	33.6	50.0	32.3	41.1
		> 40~< 60	26.4	40.7	30.7	51.8	28.4	35.5
		≥ 60	28.0	50.3	34.3	56.4	30.4	40.5
	日均照护时长(h)	≤ 5	47.6	52.8	36.4	55.4	37.1	46.1
		> 5~< 10	32.6	46.7	32.9	47.8	28.6	38.5
		≥10	23.5	42.0	30.2	50.1	26.6	34.6
环境	家庭规模	≤ 3人	34.8	47.6	33.9	49.4	31.6	40.4
		4~5人	34.0	46.3	33.0	53.0	30.3	39.2
		≥ 6人	30.5	45.9	30.0	52.0	31.1	37.7
	家庭人均月收入(元)	< 5000	27.4	45.1	32.6	50.0	29.9	37.1
		5000~< 10000	34.0	47.3	33.9	51.0	29.1	39.3
		≥ 10000	41.2	48.2	32.0	54.4	34.0	42.4
	公共政策	不满意	22.6	34.8	12.5	42.2	16.5	25.7
		较少满意	25.6	36.6	22.1	45.2	22.6	31.5
		一般满意	32.1	45.4	32.3	49.7	30.2	37.9
		较多满意	48.6	58.3	46.8	63.7	41.0	51.8
		非常满意	43.8	71.4	64.6	68.0	54.1	59.4
	社会融入	严重阻碍	25.5	36.6	25.1	40.5	24.6	30.4
		部分阻碍	29.8	45.0	29.7	46.5	27.1	35.8
		没有帮助	39.2	46.8	32.1	53.0	29.8	40.1
		较少帮助	29.5	44.3	31.8	52.2	30.9	38.4
		很大帮助	51.7	62.1	49.0	69.1	45.3	55.8

表3

表4

表5

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维度	变量(参照变量)	B	S.E.	95%CI	β	t值	P值
残疾儿童	残疾类型(多重残疾)
	视力残疾	-12.160	4.996	-21.976~-2.344	-0.127	-2.434	0.015
	听力残疾	3.523	3.985	-4.307~11.353	0.054	0.884	0.377
	言语残疾	-12.754	5.002	-22.583~-2.925	-0.131	-2.550	0.011
	肢体残疾	0.775	3.598	-6.295~7.845	0.015	0.216	0.829
	智力残疾	-3.896	4.307	-12.360~4.567	-0.052	-0.905	0.366
	精神残疾	-2.295	4.164	-10.477~5.886	-0.032	-0.551	0.582
	未定残	-16.553	4.153	-24.714~-8.392	-0.233	-3.986	< 0.001
照护者	家庭角色(祖辈)
	父亲	4.909	3.004	-0.995~10.812	0.084	1.634	0.103
	母亲	9.071	2.431	4.293~13.848	0.194	3.731	< 0.001
环境	家庭规模	-2.944	1.530	-5.950~0.061	-0.084	-1.925	0.055
	公共政策	-3.252	1.078	-5.370~-1.134	-0.134	-3.017	0.003
常量		84.863	5.708	73.647~96.079		14.868	< 0.001

维度	变量(参照变量)	B	S.E.	95%CI	β	t值	P值
残疾儿童	残疾类型(多重残疾)
	视力残疾	8.612	4.341	0.081~17.144	0.097	1.984	0.048
	听力残疾	8.686	3.443	1.920~15.451	0.145	2.523	0.012
	言语残疾	9.515	4.239	1.184~17.846	0.109	2.244	0.025
	肢体残疾	4.906	3.068	-1.124~10.935	0.102	1.599	0.111
	智力残疾	2.669	3.704	-4.610~9.948	0.039	0.721	0.472
	精神残疾	4.009	3.549	-2.966~10.984	0.062	1.129	0.259
	未定残	-0.268	3.523	-7.190~6.655	-0.004	-0.076	0.940
照护者	家庭角色(祖辈)
	父亲	0.950	2.812	-4.575~6.475	0.018	0.338	0.736
	母亲	-2.687	2.079	-6.772~1.397	-0.063	-1.293	0.197
	日均照护时长	-4.123	1.081	-6.247~-1.999	-0.174	-3.815	< 0.001
环境	公共政策	7.392	0.951	5.523~9.262	0.334	7.771	< 0.001
	社会融入	1.932	0.751	0.457~3.408	0.113	2.573	0.010
常量		17.284	5.366	6.740~27.828		3.221	0.001

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 Rehabilitation Perspective

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需求项目	条目数(n)	需求率(%)	需求满足程度(%)	需求率与满足程度差值(%)
替代性服务支持	1248	62.9	32.8	30.1
专业支持	2161	62.2	45.5	16.7
经济支持	1838	74.1	32.3	41.8
精神支持	1883	75.9	50.8	25.1
信息支持	2492	83.7	30.3	53.4
总体需求	9622	71.8	39.4	32.4

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