Schaible B, Colquitt G, Caciula M C, Carnes A, Li L, Moreau N
School of Health and Kinesiology, Georgia Southern University, Statesboro, GA, USA.
Department of Biobehavioral Sciences, Teachers College, Columbia University, Columbia University, New York, NY, USA.
Child Care Health Dev. 2018 May;44(3):370-377. doi: 10.1111/cch.12547. Epub 2018 Jan 12.
Families and caregivers of children with special healthcare needs (CSHCN) often experience financial difficulties, have unmet physical and mental health needs, and are at increased risk of marital problems due to the stress caused by carrying for their child. Within the larger population of CHSCN, young people with cerebral palsy (CP) have more unmet needs due to the complexity and potential severity of the disability. The purpose of this study was to identify factors associated with differences in insurance coverage and impact on the family of children with CP and other CHSCN.
The data were taken from the National Survey of Children with Special Health Care Needs, which was designed to examine state- and national-level estimates of CSHCN. Three variables examined differences in insurance coverage between those children diagnosed with CP versus all other CSHCN: insurance coverage for the previous year, current insurance coverage, and adequacy of insurance coverage. Four variables representing different indicators of family impact were used to assess differences between children with CP versus all other CSHCN: out-of-pocket expenses for healthcare, family financial burden, hours per week that family members spent caring for the child, and impact on family work life.
The results of this study showed significant differences between households with a child with CP and a child with another health special need in terms of insurance coverage, indicating a tendency of children with CP to be insured the entire year. As for the impact on the family in households with children with CP versus other CSHCN, there were significant differences in all four variables that were analysed.
There is limited evidence highlighting differences between the impact of caring for a child with CP and caring for other CSHCN. Caring for a child with CP has a significant impact on the family, despite insurance coverage.
有特殊医疗需求儿童（CSHCN）的家庭和照料者常常面临经济困难，有未得到满足的身心健康需求，并且由于照料孩子所带来的压力，婚姻出现问题的风险增加。在CSHCN这一更大群体中，患有脑瘫（CP）的青少年由于残疾的复杂性和潜在严重性，有更多未得到满足的需求。本研究的目的是确定与保险覆盖差异相关的因素以及对患有CP的儿童和其他CSHCN家庭的影响。
数据取自全国特殊医疗需求儿童调查，该调查旨在检查CSHCN在州和国家层面的估计情况。三个变量考察了被诊断患有CP的儿童与所有其他CSHCN之间在保险覆盖方面的差异：上一年的保险覆盖情况、当前保险覆盖情况以及保险覆盖的充足性。四个代表家庭影响不同指标的变量用于评估患有CP的儿童与所有其他CSHCN之间的差异：医疗自费支出、家庭经济负担、家庭成员每周照料孩子的时长以及对家庭工作生活的影响。
本研究结果显示，在保险覆盖方面，有CP患儿的家庭与有其他特殊健康需求患儿的家庭之间存在显著差异，这表明患有CP的儿童全年都有参保的倾向。至于有CP患儿的家庭与其他CSHCN家庭对家庭的影响，在所有四个被分析的变量上都存在显著差异。
仅有有限的证据突出了照料患有CP的儿童和照料其他CSHCN在影响方面的差异。尽管有保险覆盖，但照料患有CP的儿童对家庭仍有重大影响。
