结核病患儿家庭照顾者的照顾负担与生活质量现状及相关性研究

doi:10.3969/j.issn.1000-6621.2018.10.016

摘要/Abstract

摘要：

目的了解结核病患儿家庭照顾者所承受的照顾负担和生活质量现状,并探讨两者之间的相关性,为制定系统性家庭干预措施提供参考。方法研究采用Zarit照顾者负担量表和家庭照顾者生活质量量表,对2017年9月至2018年3月在上海市公共卫生临床中心结核科住院的结核病患儿的家庭照顾者76名进行调查。Zarit照顾者负担量表总分0~88分,分值越高表明该照顾者负担越重,0~19分为无或很少负担,20~39分轻度负担,40~59分中度负担,60分以上重度负担。家庭照顾者生活质量量表总分16~80分,分值越高,表明照顾者生活质量越高。采用t检验、单因素方差分析、秩和检验对组间资料进行比较,采用Pearson相关分析或Spearman相关分析进行相关性检验。结果结核病患儿家庭照顾者照顾负担总分为(41.39±14.86)分,其中个人负担(22.58±9.10)分,责任负担(10.79±4.88)分。家庭照顾者生活质量总分为(50.46±14.25)分,4个维度得分由低到高依次为精神维度(11.61±4.53)分、心理维度(12.70±4.40)分、社会维度(13.01±3.62)分、生理维度(13.14±3.72)分。Pearson相关分析显示,照顾者照顾负担总分与生活质量总分呈负相关(r=-0.726,P<0.001),存在显著线性相关。结论结核病患儿家庭照顾者存在不同程度的照顾负担,将影响家庭照顾者的生活质量。

关键词: 儿童, 结核, 家庭照顾者, 照顾者负担, 生活质量, 数据说明, 统计

Abstract:

Objective To investigate the status of care burden and quality of life of family caregivers living with tuberculosis (TB) children, and to explore the correlation between the two, so as to provide a reference for formulating the systematic family intervention measures. Methods Zarit Burden Interview (ZBI) and Family Caregiver-Specific Quality of Life Scale (FAMQOL) were used to investigate the family caregivers of 76 children with TB who hospitalized in Shanghai Public Health Clinical Center from September 2017 to March 2018. The total score of Zarit Burden Interview was 0-88, the higher the score was, the heavier the caregiver’s burden was. The ZBI score 0-19 indicated that there was no or little burden, the ZBI score 20-39 meant light burden, the ZBI score 40-59 meant mild burden, and the ZBI score above 60 means heavy burden. The total score of Family Caregiver-Specific Quality of Life Scale was 16-80, the higher the score was, the higher the quality of life was. T test, one-way ANOVA, rank-sum test were used to compare the data among groups, and Pearson correlation analysis or Spearman correlation analysis were used to test the correlation of care burden and quality of life of family caregivers living with TB children. Results The total score of care burden was 41.39±14.86, and the personal burden and responsibility burden scores were 22.58±9.10 and 10.79±4.88 respectively. The total FAMQOL score was 50.46±14.25, in which spiritual status (SS) was 11.61±4.53, mental status (MS) was 12.70±4.40, social concerns (SC) was 13.01±3.62 and physical status (PS) was 13.14±3.72.There was significantly negative correlation between the score of care burden and that of quality of life in the family caregivers of TB children (r=-0.726, P<0.001). Conclusion The family caregivers of TB children have care burdens in different degrees, which influence on the quality of their lives.

Key words: Child, Tuberculosis, Family caregivers, Caregiver burden, Quality of life, Data interpretation, statistical

沈蕾,张林,陶永红,汤咏军,鲍美娟,卢洪洲. 结核病患儿家庭照顾者的照顾负担与生活质量现状及相关性研究[J]. 中国防痨杂志, 2018, 40(10): 1118-1124. doi: 10.3969/j.issn.1000-6621.2018.10.016

Lei SHEN,Lin ZHANG,Yong-hong TAO,Yong-jun TANG,Mei-juan BAO,Hong-zhou. LU. Study on correlation between care burden and life quality of family caregivers of children with tuberculosis[J]. Chinese Journal of Antituberculosis, 2018, 40(10): 1118-1124. doi: 10.3969/j.issn.1000-6621.2018.10.016

图/表 2

表1

不同患儿与照顾者特征在家庭照顾者照顾负担总分与生活质量总分情况的比较

患儿与照顾者特征	例数(名) (构成比,%)		照顾者负担						照顾者生活质量
患儿与照顾者特征	例数(名) (构成比,%)		得分( $x ˉ$ ±s)		统计值		P值		得分( $x ˉ$ ±s)		统计值		P值
患儿特征
性别					t=-0.137		0.892				Z=-0.259		0.796
男	45(59.21)		41.20±14.91						50.98±14.20
女	31(40.79)		41.68±15.04						49.71±14.54
年龄(周岁)					F=2.240		0.114				H=2.510		0.285
<2	31(40.79)		40.84±12.24						50.87±13.62
2~	22(28.95)		46.45±18.10						46.68±15.04
>5	23(30.26)		37.30±13.88						53.52±14.11
是否独生					t=0.202		0.841				Z=0.204		0.838
是	43(56.58)		41.70±14.28						50.67±14.34
否	33(43.42)		41.00±15.81						50.18±14.35
疾病诊断					F=0.220		0.804				H=0.489		0.783
肺结核	22(28.95)		43.18±13.35						51.36±16.50
肺外结核	43(56.58)		40.65±15.53						50.74±14.71
肺结核并发肺外结核	11(14.47)		40.73±16.14						47.55±5.57
并发其他疾病或并发症					t=2.367		0.021				Z=-1.595		0.111
是	18(23.68)		46.28±6.99						46.89±10.39
否	58(76.32)		39.88±16.32						51.57±15.16
耐药					H=15.617		0.000				H=19.857		0.000
是	13(17.11)		54.92±12.53						38.08±8.49
否	50(65.78)		37.52±14.90						54.58±14.43
不确定	13(17.11)		42.77±7.40						47.00±9.87
患病时间(年)					H=0.644		0.725				H=0.420		0.811
<1	41(53.95)		43.07±16.48						49.71±14.72
3~	30(39.47)		39.20±11.51						52.43±13.02
>3	5(6.58)		40.80±20.07						44.80±18.38
医疗支付方式					F=5.580		0.006				F=5.780		0.005
医疗保险	19(25.00)		32.53±11.18						59.53±13.34
自费	51(67.11)		45.00±15.22						47.39±13.75
其他^a	6(7.89)		38.83±10.36						47.83±9.91
照顾者特征
性别					t=0.500		0.619				Z=0.899		0.368
男	21(27.63)		42.70±15.24						51.65±12.35
女	55(72.37)		40.83±14.81						49.94±15.08
年龄(周岁)					t=0.677		0.501				Z=-0.814		0.415
≤35	45(59.21)		42.36±15.41						49.38±13.53
>35	31(40.79)		40.00±14.16						52.03±15.33
文化程度					F=0.540		0.587				H=1.545		0.462
初中及以下	33(43.42)		43.33±14.53						51.18±13.80
高中或中专	18(23.68)		40.72±17.85						46.89±17.75
大专或本科及以上	25(32.90)		39.32±13.16						52.08±12.02
患儿与照顾者特征		例数(名) (构成比,%)		照顾者负担						照顾者生活质量
患儿与照顾者特征		例数(名) (构成比,%)		得分( $x ˉ$ ±s)		统计值		P值		得分( $x ˉ$ ±s)		统计值	P值
婚姻状况						t=-0.590		0.557				Z=0.369	0.712
已婚		66(86.84)		41.79±14.98						50.11±14.50
未婚、离异、丧偶		10(13.16)		38.80±14.58						52.80±12.93
工作情况						F=2.130		0.126				H=1.349	0.509
全职工作		15(19.74)		34.40±13.28						50.33±14.34
兼职工作		24(31.58)		43.08±15.23						54.33±13.83
无工作		37(48.68)		43.14±14.77						48.97±14.45
居住地						t=-3.559		0.001				Z=2.939	0.003
本市		20(26.32)		31.95±11.35						58.65±12.69
外地		56(73.68)		44.77±14.59						47.54±13.72
家庭月收入(元)						F=6.560		0.002				F=6.810	0.002
<3000		35(46.05)		46.97±12.61						44.89±12.97
3000~		19(25.00)		40.42±15.93						51.95±14.76
>5000		22(28.95)		33.36±13.92						58.05±12.33
照顾时间^b						F=1.940		0.151				F=3.260	0.044
一直照顾		49(64.47)		43.61±14.99						47.59±13.90
经常照顾		19(25.00)		38.95±12.97						57.00±14.78
偶尔照顾		8(10.53)		33.63±16.56						52.50±10.56
与患儿的关系						F=0.710		0.552				H=1.698	0.637
母亲		47(61.84)		41.40±15.25						49.55±15.35
父亲		17(22.37)		43.29±15.78						49.94±9.86
祖母		8(10.53)		35.00±9.72						56.38±13.11
祖父		4(5.26)		46.00±15.85						51.50±20.89
对疾病的了解程度						F=1.180		0.325				H=2.062	0.560
非常了解		7(9.21)		42.14±12.46						48.43±13.04
很了解		22(28.95)		42.32±15.01						49.91±14.43
一般了解		35(46.05)		43.17±15.73						49.23±14.50
不了解		12(15.79)		34.08±12.49						56.25±14.16

表1

表2

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