Graham R J, Pemstein D M, Palfrey J S
Children's Hospital Boston, Department of Anaesthesiology, Perioperative and Pain Medicine, Division of Critical Care, Boston, MA 02115-5724, USA.
Child Care Health Dev. 2008 May;34(3):373-9. doi: 10.1111/j.1365-2214.2008.00823.x.
To measure enrollment of children with mechanical respiratory support needs within the Massachusetts early intervention programmes (EIP) and describe challenges in execution of individual family service plans (IFSPs).
Mixed methods provided a complementary assessment. Quantitative data were collected in 2005 from the Commonwealth of Massachusetts EIP administrative database as part of a cross-sectional state census. Qualitative data were retrieved from EIP regional coordinators in a key informant focus group. Descriptive statistics were used for quantitative survey data. Audio-recordings were transcribed verbatim and a qualitative, thematic analysis was undertaken.
Four hundred and eighty children requiring mechanical respiratory support at the time of EIP enrollment were identified between 1 July 1997 and 1 January 2005. Focus group analysis revealed themes including: (1) barriers to community transition; (2) community expertise and training; (3) interface with medical providers; and (4) the role of web-based resources. Isolation of families emerged as a recurrent and resounding concept, relating to all of the themes.
Findings support the assumption that implementation of IFSPs for the cohort of children with chronic mechanical respiratory support needs in EIPs is challenging. Barriers reflect inconsistent care coordination and practical encumbrances, contributing to the physical and social isolation of these children and their families.
衡量马萨诸塞州早期干预项目（EIP）中需要机械通气支持的儿童的登记情况，并描述执行个别家庭服务计划（IFSP）时面临的挑战。
采用混合方法进行补充评估。2005年，作为横断面州普查的一部分，从马萨诸塞州EIP行政数据库收集了定量数据。定性数据从关键信息提供者焦点小组中的EIP区域协调员处获取。描述性统计用于定量调查数据。对录音进行逐字转录，并进行定性的主题分析。
在1997年7月1日至2005年1月1日期间，共识别出480名在EIP登记时需要机械通气支持的儿童。焦点小组分析揭示了以下主题：（1）社区过渡的障碍；（2）社区专业知识和培训；（3）与医疗服务提供者的接口；（4）网络资源的作用。家庭孤立是一个反复出现且影响深刻的概念，与所有主题相关。
研究结果支持这样一种假设，即针对EIP中有慢性机械通气支持需求的儿童群体实施IFSP具有挑战性。障碍反映了护理协调不一致和实际阻碍，导致这些儿童及其家庭在身体和社会上的孤立。
