注意缺陷多动障碍患儿家庭照顾负担初步研究
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摘要
目的:对注意缺陷多动障碍(ADHD)患儿家庭照顾负担进行初步描述,并探讨基本资料、客观负担、主观负担之间的相关关系。方法:采取横断面研究方法,选取符合美国DSM-IV诊断标准并接受临床治疗至少半年的ADHD患儿家庭照顾者81例,用自制问卷收集照顾者基本资料以及客观负担情况,用Zarit照顾者负担量表测量主观负担轻重。结果:客观负担部分,照顾者每周额外照顾时间集中在11～15h,每月额外照顾总费用集中在1001～1500元,患儿确诊前后照顾者社会活动减少。主观负担部分,90. 1%的被调查者存在不同程度的主观负担。相关分析显示,客观时间负担增加、社会活动减少与较高主观负担得分相关。城镇家庭照顾者社会活动减少程度高于农村家庭照顾者。结论:本研究提示ADHD患儿家庭照顾者主观负担严重,照顾者对时间负担的感知高于经济负担,照顾任务会影响照顾者的社会活动并存在城乡差别。
Objective: To explore the level of family caregiver burden of children with attention-deficit/hyperactivity disorder( ADHD) and analyze the correlation among basic information,objective burden and subjective burden.Methods: A cross-sectional study was designed. Totally 81 family caregivers were investigated with self-designed questionnaire for basic information and objective burden,and the Zarit Caregiver Burden Interview( ZBI)was used for subjective burden. Results: In the aspect of objective burden,the weekly extra caring time was concentrated in 11-15 hours,and the monthly extra total financial cost was concentrated in 1001-1500 yuan. There was statistical difference in the decrease of social activities after the diagnosis of disease. In the aspect of subjective burden,90. 1% of the respondents had different degrees of subjective burden. Among them,the proportion of low burden was 51. 9%,of moderate burden was 32. 1%,and of heavy burden was 6. 2%. The increase of objective time burden and decrease of social activities were related to higher subjective burden scores. The decrease of social activities in urban areas was more significant than that in rural areas. Conclusion: The subjective burden of family caregivers of children with attention-deficit/hyperactivity disorder is possibly serious. The caregivers' perception of time burden is higher than that of the economic burden. The caring tasks could affect the social activities of caregivers with statistical difference between urban and rural areas.
Objective: To explore the level of family caregiver burden of children with attention-deficit/hyperactivity disorder( ADHD) and analyze the correlation among basic information,objective burden and subjective burden.Methods: A cross-sectional study was designed. Totally 81 family caregivers were investigated with self-designed questionnaire for basic information and objective burden,and the Zarit Caregiver Burden Interview( ZBI)was used for subjective burden. Results: In the aspect of objective burden,the weekly extra caring time was concentrated in 11-15 hours,and the monthly extra total financial cost was concentrated in 1001-1500 yuan. There was statistical difference in the decrease of social activities after the diagnosis of disease. In the aspect of subjective burden,90. 1% of the respondents had different degrees of subjective burden. Among them,the proportion of low burden was 51. 9%,of moderate burden was 32. 1%,and of heavy burden was 6. 2%. The increase of objective time burden and decrease of social activities were related to higher subjective burden scores. The decrease of social activities in urban areas was more significant than that in rural areas. Conclusion: The subjective burden of family caregivers of children with attention-deficit/hyperactivity disorder is possibly serious. The caregivers' perception of time burden is higher than that of the economic burden. The caring tasks could affect the social activities of caregivers with statistical difference between urban and rural areas.
引文
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[9] Emanuel EJ,Fairclough DL,Slutsman J,et al. Understanding economic and other burdens of terminal illness:the experience of patients and their caregivers[J]. Ann Intern Med,2000,132(6):451-459.
[10]曹晓翼,张娇,陈林.社会支持和应对方式对血液透析病人家庭照顾者负担的影响[J].护理研究,2017,31(31):4036-4038.
[11]曾龙武,唐漫漫,聂华林,等.照顾者的照顾负担、应对方式与焦虑抑郁情绪相关性分析[J].现代预防医学,2015,42(17):3185-3187.
[12]于文军,胡纪泽,习萍,等.精神分裂症患者家属心理健康研究Ⅱ:照顾负担影响因素[J].中国临床心理学杂志,2011,19(4):518-520.
[13]唐漫漫,曾龙武,任璐.肠癌化疗患者主要照顾者的焦虑抑郁情绪[J].中国心理卫生杂志,2015,29(2):92-97.
[14]Suzanne C. Ho,A. C., Jean Woo, et al. Impact of caregiving on health and quality of life:a comparative population-based study of caregivers for elderly persons and non-caregivers[J]. JGerontol,2009,64(8):873-9.
[15]白冠男,钮文异,王玉凤.注意缺陷多动障碍儿童服药依从性的定性研究.中国心理卫生杂志[J]. 2013,27(7):529-533.
[16]王烈,杨小湜,侯哲,等.护理者负担量表中文版的应用与评价[J].中国公共卫生,2006,22(8):970-972.
[2]童连,史慧静,臧嘉捷.中国儿童ADHD流行状况Meta分析[J].中国公共卫生,2013,29(9):1279-1283.
[3] Grad J, Sainsbury P. Mental illness and the family[J]. Lancet.1963,281(7280):544-547.
[4] Jeglic EL,Pepper CM,Ryachenko KA,et al. A caregiving model of coping with a partner's depression[J]. Fam Relat,2005,54(1):37-45.
[5] Northouse LL, Katapodi MC, Song L, et al. Interventions with Family Caregivers of CancerPatients Meta-Analysis of Randomized Trials[J]. CA Cancer J Clin,2010,60(5):317-339.
[6] Grbich CF,Maddocks I,Parker D. Family caregivers,their needs,and home-based palliative cancer services[J]. J Family Stud. 2001,7(2):171-188.
[7] Longo CJ,Fitch M,Deber RB,et al. Financial and family burden associated with cancer treatment inOntario, Canada[J]. Support Care Cancer,2006,14(11):1077-1085.
[8]黄源,刘国恩,刘跃华,等.精神分裂症的疾病经济负担:基于广州医保数据的分析[J].中国生经济,2014,33(5):62-65.
[9] Emanuel EJ,Fairclough DL,Slutsman J,et al. Understanding economic and other burdens of terminal illness:the experience of patients and their caregivers[J]. Ann Intern Med,2000,132(6):451-459.
[10]曹晓翼,张娇,陈林.社会支持和应对方式对血液透析病人家庭照顾者负担的影响[J].护理研究,2017,31(31):4036-4038.
[11]曾龙武,唐漫漫,聂华林,等.照顾者的照顾负担、应对方式与焦虑抑郁情绪相关性分析[J].现代预防医学,2015,42(17):3185-3187.
[12]于文军,胡纪泽,习萍,等.精神分裂症患者家属心理健康研究Ⅱ:照顾负担影响因素[J].中国临床心理学杂志,2011,19(4):518-520.
[13]唐漫漫,曾龙武,任璐.肠癌化疗患者主要照顾者的焦虑抑郁情绪[J].中国心理卫生杂志,2015,29(2):92-97.
[14]Suzanne C. Ho,A. C., Jean Woo, et al. Impact of caregiving on health and quality of life:a comparative population-based study of caregivers for elderly persons and non-caregivers[J]. JGerontol,2009,64(8):873-9.
[15]白冠男,钮文异,王玉凤.注意缺陷多动障碍儿童服药依从性的定性研究.中国心理卫生杂志[J]. 2013,27(7):529-533.
[16]王烈,杨小湜,侯哲,等.护理者负担量表中文版的应用与评价[J].中国公共卫生,2006,22(8):970-972.