Darrah J, Wiart L, Magill-Evans J, Ray L, Andersen J
Department of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB, Canada T6G 2G4.
Child Care Health Dev. 2012 Jan;38(1):41-7. doi: 10.1111/j.1365-2214.2010.01160.x. Epub 2010 Nov 18.
Family-centred service, functional goal setting and co-ordination of a child's move between programmes are important concepts of rehabilitation services for children with cerebral palsy identified in the literature. We examined whether these three concepts could be objectively identified in programmes providing services to children with cerebral palsy in Alberta, Canada.
Programme managers (n= 37) and occupational and physical therapists (n= 54) representing 59 programmes participated in individual 1-h semi-structured interviews. Thirty-nine parents participated in eleven focus groups or two individual interviews. Evidence of family-centred values in mission statements and advisory boards was evaluated. Therapists were asked to identify three concepts of family-centred service and to complete the Measures of Process of Care for Service Providers. Therapists also identified therapy goals for children based on clinical case scenarios. The goals were coded using the components of the International Classification of Functioning Disability and Health. Programme managers and therapists discussed the processes in their programmes for goal setting and for preparing children and their families for their transition to other programmes. Parents reflected on their experiences with their child's rehabilitation related to family-centredness, goal setting and co-ordination between programmes.
All respondents expressed commitment to the three concepts, but objective indicators of family-centred processes were lacking in many programmes. In most programmes, the processes to implement the three concepts were informal rather than standardized. Both families and therapists reported limited access to general information regarding community supports.
Lack of formal processes for delivery of family-centred service, goal-setting and co-ordination between children's programmes may result in inequitable opportunities for families to participate in their children's rehabilitation despite attending the same programme. Standardized programme processes and policies may provide a starting point to ensure that all families have equitable opportunities to participate in their child's rehabilitation programme.
以家庭为中心的服务、功能目标设定以及儿童在不同项目间转换的协调，是文献中确定的脑瘫儿童康复服务的重要概念。我们研究了在加拿大艾伯塔省为脑瘫儿童提供服务的项目中，这三个概念是否能够被客观识别。
代表59个项目的37名项目管理人员以及职业和物理治疗师（共54人）参与了时长1小时的个人半结构化访谈。39名家长参与了11个焦点小组或2次个人访谈。评估了使命声明和咨询委员会中以家庭为中心价值观的证据。要求治疗师确定以家庭为中心服务的三个概念，并完成服务提供者护理过程测量。治疗师还根据临床病例场景确定儿童的治疗目标。使用《国际功能、残疾和健康分类》的组成部分对目标进行编码。项目管理人员和治疗师讨论了他们项目中目标设定以及为儿童及其家庭向其他项目过渡做准备的过程。家长们反思了他们孩子与以家庭为中心、目标设定以及项目间协调相关的康复经历。
所有受访者都表示致力于这三个概念，但许多项目缺乏以家庭为中心过程的客观指标。在大多数项目中，实施这三个概念的过程是非正式的，而非标准化的。家庭和治疗师都报告说，获取有关社区支持的一般信息的机会有限。
缺乏提供以家庭为中心服务、目标设定以及儿童项目间协调的正式流程，可能导致家庭尽管参加了同一个项目，但参与孩子康复的机会不平等。标准化的项目流程和政策可能为确保所有家庭都有平等机会参与孩子的康复项目提供一个起点。
