Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors
Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors
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DOI：
10.1016/j.socscimed.2013.07.012
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发表时间：
2013-11-01
影响因子：
5.4
通讯作者：
McConnell, David
中科院分区：
文献类型：
--
作者：
Hodgetts, Sandra;Nicholas, David;McConnell, David
以家庭为中心的护理(FCC)与改善父母和孩子的结局有关，但由于家庭、专业、组织和系统的因素和政策，其实施可能具有挑战性。这项研究旨在增加对加拿大艾伯塔省患有自闭症谱系障碍(ASD)儿童的家庭如何经历FCC的了解和理解。152名患有自闭症儿童的父母分别为每个利用的服务部门完成了护理流程的测量，146名为自闭症患者工作的专业人员完成了护理服务提供者的流程测量。此外，对19名父母进行了深入的访谈，有目的地对儿童和家庭特征的多样性进行了抽样。数据是在2011年收集的。采用描述性和推断性统计方法对定量数据进行分析。访谈成绩单使用扎根理论恒定比较方法进行分析，产生了一个数据生成的理论模型，描述了家庭随着时间的推移和跨服务部门的FCC经验。服务行业的FCC得分没有统计学意义上的差异，但父母和专业人士之间的FCC得分在统计学上存在显著差异。定性数据显示了从各部门的专业人员那里收到FCC的积极经验和看法，但在系统一级(即行政部门、资助者)对FCC的负面经验和看法。这些广泛的经验形成了一个核心主题“排斥制度”，其中整合了关键主题：(1)“斗争”，(2)“护理的作用和限制”，和(3)“治疗融洽”。专业人员和服务提供商可以使用调查结果来确保服务反映当前FCC的概念化，决策和政策制定者可以使用调查结果来识别实施FCC的系统性障碍并为政策变化提供信息。(C)2013爱思唯尔有限公司。保留所有权利。
Family-centered care (FCC) has been linked with improved parent and child outcomes, yet its implementation can be challenging due to family, professional, organizational and systemic factors and policies. This study aims to increase knowledge and understanding of how families with children with autism spectrum disorder (ASD) experience FCC in Alberta, Canada. 152 parents with a child with ASD completed the Measure of Processes of Care, separately for each utilized service sector, and 146 professionals working with persons with ASD completed the Measure of Processes of Care Service Providers. Additionally, in-depth interviews were conducted with a sub-sample of 19 parents, purposefully sampled for diversity in child and family characteristics. Data were collected in 2011. Descriptive and inferential statistics were used to analyze quantitative data. Interview transcripts were analyzed using grounded theory constant comparison methods, yielding a data generated theoretical model depicting families' experiences with FCC over time and across service sectors. There were no statistically significant differences in FCC scores across service sectors, but statistically significant differences in FCC scores between parents' and professionals' were found. Qualitative data revealed positive experiences and perceptions of receiving FCC from professionals "on the ground" across sectors, but negative experiences and perceptions of FCC at the systems level (i.e., administration, funders). These broad experiences emerged as a core theme "System of Exclusion", which integrated the key themes: (1) "The Fight", (2) "Roles and Restrictions of Care", and (3) "Therapeutic Rapport". Professionals and service providers can use findings to ensure that services reflect current conceptualizations of FCC, and decision and policy makers can use findings to recognize systemic barriers to implementing FCC and inform policy change. (C) 2013 Elsevier Ltd. All rights reserved.