残疾儿童照护者生活质量及其影响因素分析

doi:10.3969/j.issn.1006-9771.2021.10.004

Abstract

Abstract:

Objective To explore the quality of life of caregivers of children with disabilities and its influencing factors.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 12-item Short-form Health Survey (SF-12) was used to measure the quality of life of 496 caregivers, and multiple linear regression was performed to analyze the related factors.Results The score of physical component summary (PCS) of caregivers was (51.67±8.11), and the score of mental component summary (MCS) was (42.10±12.66). The scores of PCS were lower in caregivers with children aged 6 to 18 years (B = -1.783, 95%CI -3.279 to -0.287, P = 0.020), children with emotional instability (B = 2.719, 95%CI 1.254 to 4.184, P < 0.001), female caregivers (B = -3.765, 95%CI -6.578 to -0.953, P = 0.009), and caregivers who were relatively dissatisfied with the policy (B = 1.973, 95%CI 0.367 to 3.578, P = 0.016); and were higher in caregivers with children with speech disabilities (B = 3.463, 95%CI 0.053 to 6.873, P = 0.047). The types of disabilities of children (B_hearing = 9.465, 95%CI 5.107 to 13.823, P < 0.001; B_undetermined = 5.999, 95%CI 1.558 to 10.441, P = 0.008), playmates of children (B = 2.626, 95%CI 0.352 to 4.901, P = 0.024), education level of caregivers (B_{high middle school} = -4.701, 95%CI -8.028 to -1.374, P = 0.006; B_{high school} = -3.610, 95%CI -6.604 to -0.615, P = 0.018), family size (B = 2.616, 95%CI 0.479 to 4.753, P = 0.017) and per capita monthly income (B _{< 5000 Yuan}= -6.572, 95%CI -9.136 to -4.008, P < 0.001; B_{5000 to < 10000 Yuan} = -4.932, 95%CI -7.544 to -2.319, P < 0.001) were associated with the scores of MCS.Conclusion The quality of life, especially the mental health, of caregivers of children with disabilities is poor. The influencing factors cover multiple dimensions such as caregivers, children, family and social environment.

Key words: children with disabilities, caregivers, quality of life, influencing factors

CLC Number:

CHEN Yu-qian,SUN Mei,LÜ Jun,QIU Fu-bing,QIU Fen,LI An-qiao,XIA Cong,ZHENG Hong-ying. Quality of Life and It's Influencing Factors for Caregivers of Children with Disabilities[J]. 《Chinese Journal of Rehabilitation Theory and Practice》, 2021, 27(10): 1144-1151.

Figures/Tables 6

维度	变量(参照变量)	B	S.E.	95%CI	$β$	t值	P值
被照护儿童	年龄(< 6岁)	-1.783	0.761	-3.279~-0.287	-0.110	-2.342	0.020
	残疾类型(多重残疾)
	视力残疾	2.270	1.736	-1.141~5.680	0.069	1.308	0.192
	听力残疾	-0.821	1.456	-3.683~2.040	-0.036	-0.564	0.573
	言语残疾	3.463	1.735	0.053~6.873	0.106	1.995	0.047
	肢体残疾	1.566	1.273	-0.937~4.068	0.085	1.229	0.220
	智力残疾	0.165	1.468	-2.720~3.050	0.006	0.112	0.911
	精神残疾	2.033	1.445	-0.806~4.871	0.083	1.407	0.160
	未定残	2.135	1.504	-0.821~5.091	0.088	1.419	0.156
	儿童情绪(不稳定)	2.719	0.746	1.254~4.184	0.164	3.646	< 0.001
照护者	照护者性别(男)	-3.765	1.431	-6.578~-0.953	-0.211	-2.630	0.009
	家庭角色(父亲)
	母亲	1.334	1.679	-1.966~4.634	0.083	0.794	0.428
	(外)祖父母	-2.302	1.532	-5.313~0.708	-0.127	-1.503	0.134
	文化程度(初中及以下)
	高中或中专	0.386	1.155	-1.885~2.656	0.020	0.334	0.739
	大专及以上	-0.077	1.216	-2.467~2.313	-0.005	-0.063	0.949
	日均照护时长(< 6 h)
	6~< 12 h	0.694	0.862	-0.999~2.387	0.040	0.805	0.421
	≥ 12 h	-1.496	0.979	-3.420~0.428	-0.080	-1.528	0.127
环境	家庭人均月收入(≥ 10000元)
	< 5000元	-1.619	0.869	-3.327~0.088	-0.098	-1.863	0.063
	5000~< 10000元	0.081	0.892	-1.672~1.835	0.005	0.091	0.927
	家庭氛围(和睦)	-1.275	0.741	-2.730~0.180	-0.076	-1.721	0.086
	公共政策(不满意)	1.973	0.817	0.367~3.578	0.106	2.415	0.016
常量		55.388	3.328	48.848~61.927		16.643	< 0.001

维度	变量(参照变量)	B	S.E.	95%CI	$β$	t值	P值
被照护儿童	年龄(< 6岁)	-1.744	1.141	-3.987~0.499	-0.068	-1.528	0.127
	残疾类型(多重残疾)
	视力残疾	-1.452	2.629	-6.618~3.713	-0.028	-0.553	0.581
	听力残疾	9.465	2.218	5.107~13.823	0.264	4.268	< 0.001
	言语残疾	1.532	2.662	-3.699~6.762	0.029	0.575	0.565
	肢体残疾	-2.001	1.900	-5.734~1.732	-0.069	-1.053	0.293
	智力残疾	2.325	2.207	-2.012~6.663	0.057	1.054	0.293
	精神残疾	1.335	2.194	-2.977~5.647	0.034	0.608	0.543
	未定残	5.999	2.260	1.558~10.441	0.157	2.654	0.008
	是否独生子女(是)	2.049	1.144	-0.198~4.297	0.074	1.792	0.074
	儿童情绪稳定性(不稳定)	1.107	1.116	-1.086~3.300	0.042	0.992	0.322
	伙伴(无)	2.626	1.158	0.352~4.901	0.102	2.269	0.024
照护者	文化程度(初中及以下)
	高中或中专	-4.701	1.693	-8.028~-1.374	-0.156	-2.777	0.006
	大专及以上	-3.610	1.524	-6.604~-0.615	-0.139	-2.368	0.018
环境	家庭规模(4人及以下)	2.616	1.088	0.479~4.753	0.101	2.405	0.017
	家庭人均月收入(≥ 10000元)
	< 5000元	-6.572	1.305	-9.136~-4.008	-0.252	-5.036	< 0.001
	5000~< 10000元	-4.932	1.330	-7.544~-2.319	-0.180	-3.709	< 0.001
	公共政策(不满意)	1.252	1.223	-1.152~3.656	0.043	1.023	0.307
常量		36.137	4.355	27.619~44.654		8.337	< 0.001

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变量		n	生理健康	心理健康	t/F值^b	P值^b	t/F值^c	P值^c
性别	男	306	51.55±8.23	42.14±12.72	-0.396	0.692	0.081	0.935
	女	190	51.85±7.92	42.04±12.60
年龄(岁)	< 6	279	52.73±7.27	44.20±12.48	3.275	0.001	4.255	< 0.001
	6~18	217	50.30±8.90	39.41±12.41
是否独生子女^a	是	344	51.78±8.25	41.34±12.73	0.326	0.745	-2.104	0.036
	否	150	51.53±7.38	43.94±12.38
致残原因	先天	199	51.74±8.24	42.76±12.54	0.168	0.867	0.947	0.344
	后天	297	51.62±8.03	41.66±12.75
残疾类型	视力残疾	32	53.79±5.74	38.87±13.14	2.733^d	0.009	11.810^d	< 0.001
	听力残疾	72	51.65±7.43	51.39±8.65
	言语残疾	32	54.65±6.54	41.52±14.22
	智力残疾	54	49.06±8.96	40.94±10.93
	精神残疾	61	51.47±8.90	40.92±12.40
	肢体残疾	129	51.89±8.41	37.54±11.73
	多重残疾	54	49.50±9.58	38.69±12.90
	未定残	62	52.95±6.00	47.91±11.70
情绪稳定性	不稳定	191	49.47±9.38	40.04±12.24	-4.566^e	< 0.001	-2.885	0.004
	稳定	305	53.05±6.87	43.39±12.77
伙伴	无	212	50.92±8.80	39.90±12.63	-1.767	0.078	-3.382	0.001
	有	284	52.22±7.52	43.75±12.46

变量		n	生理健康	心理健康	t/F值^a	P值^a	t/F值^b	P值^b
性别	男	141	53.92±6.81	42.41±13.01	4.303^c	< 0.001	0.342	0.732
	女	355	50.78±8.41	41.98±12.54
家庭角色	父亲	98	54.48±5.62	41.77±12.76	10.398^d	< 0.001	0.436	0.647
	母亲	265	51.56±7.91	41.78±12.29
	(外)祖父母	133	49.80±9.43	42.98±13.37
文化程度	初中及以下	82	49.80±8.79	43.61±13.11	3.951^d	0.020	3.771	0.024
	高中或中专	113	50.72±9.56	39.30±13.12
	大专及以上	301	52.53±7.17	42.74±12.24
日均照护时长(h)	< 6	215	52.62±7.58	42.08±12.34	6.722	0.001	0.059	0.942
	6~< 12	161	52.11±7.62	41.90±13.14
	≥ 12	120	49.36±9.20	42.42±12.68

变量		n	生理健康	心理健康	t/F值^c	P值^c	t/F值^d	P值^d
家庭规模	4人及以下	295	51.73±8.12	40.44±12.60	0.223	0.823	-3.589	< 0.001
	5人及以上	201	51.57±8.11	44.55±12.38
家庭氛围	和睦	182	53.02±7.56	43.58±13.37	2.913^e	0.004	1.940^e	0.053
	不和睦	314	50.89±8.32	41.24±12.17
家庭人均月收入(元)^a	< 5000	193	50.02±8.42	39.30±12.58	6.905^f	0.001	17.378^f	< 0.001
	5000~< 10000	154	52.66±7.74	41.26±13.04
	≥ 10000	145	52.82±7.47	47.04±10.89
公共政策^b	不满意	370	51.21±8.47	41.24±12.54	-2.884^e	0.004	-2.701	0.007
	满意	124	53.30±6.44	44.77±12.77

Quality of Life and It's Influencing Factors for Caregivers of Children with Disabilities

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维度	影响因素
被照护儿童	儿童年龄	部分受访者表示随着儿童年龄增长,照护残疾儿童需要耗费更多精力,同时照护者会担心儿童成年后的发展和融入社会等
被照护儿童	情绪稳定性	部分受访者表示儿童情绪不稳定,常常哭闹、发脾气,有攻击行为,使自身感到疲惫和烦躁
照护者	家庭角色	大部分祖辈受访者提及自身因年纪而易疲劳,照护残疾儿童时感到吃力,担忧自己年迈或生病时无人照护儿童
照护者	照护时长	部分受访者表示长时间的照护使心情压抑,体力常常透支,有亲属帮助轮换照护时会轻松一些
家庭和社会环境	经济收入	多个受访者表示经济状况是重要的影响因素,经济压力大会影响儿童康复,同时增加照护者的身心负担
	家庭规模	部分家庭规模小的受访者表示,因为没有人可以帮自己,只能靠自己努力支撑全部的照护工作
	公共政策	部分受访者表示,由于缺乏完善的教育政策保障,残疾儿童难以融入普通学校就读,不利于儿童发展,同时增加照护负担

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