A national profile of caregiver challenges among more medically complex children with special health care needs.
A national profile of caregiver challenges among more medically complex children with special health care needs.
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DOI：
10.1001/archpediatrics.2011.172
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发表时间：
2011-11
影响因子：
--
通讯作者：
Casey, Patrick H.
中科院分区：
文献类型：
--
作者：
Kuo, Dennis Z.;Cohen, Eyal;Agrawal, Rishi;Berry, Jay G.;Casey, Patrick H.
描述具有特殊医疗保健需求的更复杂儿童（CSHCN）的全国流行率及其家庭面临的照顾者挑战的多样性。2005-06年全国有特殊医疗保健需求的儿童调查的二次分析（n= 40，723）。美国人口。CSHCN的国家样本。更复杂的CSHCN通过纳入儿童健康和家庭需求的组成部分来定义，包括医疗技术依赖性和由≥2名专科医生进行的护理。照顾者的挑战是由家庭报告的照顾负担定义的，包括提供护理协调和家庭护理的时间;医疗服务使用，由过去12个月的医疗服务接触定义;未满足的需求，由15个个人医疗和一个单一的非医疗需求定义。在CSHCN中，3.2%（加权n= 324，323）符合复杂标准，占美国所有儿童的0.44%。更复杂的CSHCN的家庭报告每周护理协调的中位数为2 [IQR 1，6]小时，每周直接家庭护理的中位数为11-15 [IQR 6，>21]小时。超过一半（56.8%）的人报告有经济问题，54.1%的人报告有成员因子女健康而停止工作，48.8%的人报告有至少1项医疗服务需求未得到满足，33.1%的人报告难以获得非医疗服务。特殊和多样化的需求是常见的家庭照顾者更复杂的CSHCN。加强护理协调支持、临时护理和直接家庭护理可能会开始，以解决许多家庭面临的巨大生活负担和多种未满足的需求。
To profile the national prevalence of more-complex children with special health care needs (CSHCN) and the diversity of caregiver challenges that their families confront. Secondary analysis of the 2005-06 National Survey of Children with Special Health Care Needs (n=40,723). United States-based population. National sample of CSHCN. More-complex CSHCN were defined by incorporating components of child health and family need, including medical technology dependence and care by ≥2 subspecialists. Caregiver challenges were defined by family reported care burden, including hours providing care coordination and home care; medical care use, defined by health care encounters in the last 12 months; and unmet needs, defined by 15 individual medical and a single non-medical need. Of CSHCN, 3.2% (weighted n=324,323) met complex criteria, representing 0.44% of all children in the United States. Families of more-complex CSHCN reported a median of 2 [IQR 1,6] hours a week on care coordination and 11-15 [IQR 6, >21] hours per week on direct home care. Over half (56.8%) reported financial problems, 54.1% reported that a member stopped working because of the child’s health, 48.8% reported ≥1 unmet medical service need, and 33.1% reported difficulty accessing non-medical services. Extraordinary and diverse needs are common in family caregivers of more-complex CSHCN. Enhanced care coordination support, respite care, and direct home care may begin to address the substantial caregiving burden and the multiple unmet needs that many of these families face.
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DOI：
10.1046/j.1365-2788.2003.00484.x
发表时间：
2003-05-01
影响因子：
3.6
作者：
Baker, BL;McIntyre, LL;Low, C
通讯作者：
Low, C
影响因子：
8
作者：
Burns, Katherine H.;Casey, Patrick H.;Robbins, James M.
通讯作者：
Robbins, James M.
影响因子：
1.9
作者：
MacDonald, H.;Callery, P.
通讯作者：
Callery, P.
影响因子：
2.3
作者：
Kelly, Anne;Golnik, Allison;Cady, Rhonda
通讯作者：
Cady, Rhonda
影响因子：
5
作者：
ANDERSEN, RM
通讯作者：
ANDERSEN, RM