Rosen-Reynoso Myra, Porche Michelle V, Kwan Ngai, Bethell Christina, Thomas Veronica, Robertson Julie, Hawes Eva, Foley Susan, Palfrey Judith
Institute for Community Inclusion, University of Massachusetts, Boston, 100 Morrissey Blvd., Boston, MA, 02125, USA.
School of Education, Boston University, Two Silber Way, Boston, MA, 02215, USA.
Matern Child Health J. 2016 May;20(5):1041-53. doi: 10.1007/s10995-015-1890-z.
Families, clinicians and policymakers desire improved delivery of health and related services for children with special health care needs (CSHCN). We analyzed factors associated with ease of use in obtaining such services. We also explored what were specific difficulties or delays in receiving services. By examining data from the National Survey of Children with Special Health Care Needs (NS-CSHCN 2009-2010) and using the revised criteria for "ease of use," we were able to assess the percentage of parents who reported that their experiences seeking services for their children met those criteria.
We performed Chi square tests to examine associations between the independent variables and their relationship to the difficulties or delays assessed in the survey; including: eligibility, availability of services, waiting lists, cost, and access to information. We used logistic regression to determine the association of meeting the "ease of use" criteria with socio-demographic, complexity of need, and access variables.
Overall, a third of families of CSHCN (35.3 %) encounter difficulties, delays, or frustrations in obtaining health and related services. The lack of access to health and community services in this study fell most heavily on children from racial/ethnic minority backgrounds, those in poverty, and those with complex emotional/behavioral or developmental needs and functional limitations.
for Practice CSHCN require services from a broad array of providers across multiple systems. Unfortunately, there are certain difficulties that hamper the accessibility of these systems. These findings underscore the need for both practice-level response and systems-level reform to ensure equitable distribution of health and community resources.
家庭、临床医生和政策制定者都希望为有特殊医疗需求的儿童（CSHCN）改善健康及相关服务的提供。我们分析了与获得此类服务的易用性相关的因素。我们还探究了在接受服务方面存在哪些具体困难或延误。通过研究《全国有特殊医疗需求儿童调查》（NS-CSHCN 2009 - 2010）的数据并使用修订后的“易用性”标准，我们能够评估报告称其为孩子寻求服务的经历符合这些标准的家长的比例。
我们进行卡方检验，以检查自变量与它们与调查中评估的困难或延误之间的关系；包括：资格、服务可用性、等候名单、费用以及信息获取。我们使用逻辑回归来确定符合“易用性”标准与社会人口统计学、需求复杂性和获取变量之间的关联。
总体而言，三分之一的CSHCN家庭（35.3%）在获得健康及相关服务时遇到困难、延误或挫折。在本研究中，缺乏获得健康和社区服务的情况在来自种族/族裔少数群体背景的儿童、贫困儿童以及有复杂情绪/行为或发育需求及功能限制的儿童中最为严重。
实践方面CSHCN需要多个系统中众多提供者提供的服务。不幸的是，存在某些困难阻碍了这些系统的可及性。这些发现强调了实践层面的应对措施和系统层面改革的必要性，以确保健康和社区资源的公平分配。
