Included but isolated: early intervention programmes provision for children and families with chronic respiratory support needs
Included but isolated: early intervention programmes provision for children and families with chronic respiratory support needs
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DOI：
10.1111/j.1365-2214.2008.00823.x
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发表时间：
2008-05-01
影响因子：
1.9
通讯作者：
Palfrey, J. S.
中科院分区：
文献类型：
--
作者：
Graham, R. J.;Pemstein, D. M.;Palfrey, J. S.
目的测量马萨诸塞州早期干预计划(EIP)中需要机械呼吸支持的儿童的登记人数，并描述执行个别家庭服务计划(IFSP)的挑战。方法混合方法提供补充评估。量化数据是在2005年从马萨诸塞州联邦EIP行政数据库收集的，作为横断面州普查的一部分。从EIP区域协调员那里检索到了定性数据，这些数据来自一个关键的信息焦点小组。定量调查数据采用描述性统计方法。结果在1997年7月1日至2005年1月1日期间，确定了480名在登记时需要机械呼吸支持的儿童。焦点小组分析揭示的主题包括：(1)社区过渡的障碍；(2)社区专门知识和培训；(3)与医疗提供者的联系；(4)基于网络的资源的作用。家庭隔离是一个反复出现的和响亮的概念，涉及所有主题。结论研究结果支持这样的假设，即在EIP中实施IFSP对有慢性机械呼吸支持需求的儿童队列是具有挑战性的。障碍反映了护理协调不一致和实际负担，导致这些儿童及其家庭在身体和社会上孤立。
Purpose To measure enrolment 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).Methods 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.Results Four hundred and eighty children requiring mechanical respiratory support at the time of EIP enrolment 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.Conclusions 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.