School of Allied Health, Australian Catholic University, Melbourne, Australia.
School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
Disabil Rehabil. 2021 Feb;43(4):458-467. doi: 10.1080/09638288.2019.1629652. Epub 2019 Jun 23.
To understand parents' experiences of evidence-based assessment by health professionals for their child with cerebral palsy.
A qualitative interpretive description study was undertaken. Primary carers of children with cerebral palsy (aged 3-18 years) from south-eastern Australia were invited to participate. Face-to-face interviews were held using a semi-structured topic guide and data analyzed inductively. Credibility was ensured through: journal reflections; co-author review; audit trail; and, participant member-checking.
Fourteen parents of children with cerebral palsy, representing Gross Motor Functional Classification System levels I-V, participated. Six themes emerged: (1) Protection; (2) Positively Framed; (3) Bridging the Gap; (4) Involvement; (5) Finding Worth; and (6) Trust. Central to parents' experience was protection of their child's identity and personal self. Assessment can be emotionally confronting, at any stage. Representing the child positively and highlighting possibilities was deemed essential. Parents' involvement ranged from being overlooked spectators to being instigators of assessment. Evidence-based assessment was worthwhile when relevant to parents' direction and family context. The researchers' interpretive description generated a schema and metaphor-the Steering Wheel for Collaborative Assessment.
A strengths-based approach to diagnosis and assessment is essential. The resulting interpretive description may assist health professionals align evidence-based assessment practices with family-centred care.Implications for rehabilitationParents of children who have cerebral palsy describe having to protect their child's identity and representation, and their own personal well-being, through evidence-based assessment and diagnostic processes.Involving parents in the process of evidence-based assessment and adopting a strengths-based approach is essential.The interpretive description developed-the Steering Wheel for Collaborative Assessment-may assist health professionals to implement evidence-based assessment tools in ways consistent with family-centred care principles.
了解健康专业人员对脑瘫患儿进行循证评估时家长的体验。
采用定性解释性描述研究。邀请来自澳大利亚东南部的脑瘫儿童（3-18 岁）的主要照顾者参与。使用半结构化主题指南进行面对面访谈，并进行归纳式数据分析。通过以下方式确保可信度：日志反思；合著者审查；审计线索；以及参与者的成员核对。
共有 14 名脑瘫儿童的家长参与了研究，代表了粗大运动功能分类系统 1-5 级。出现了 6 个主题：（1）保护；（2）积极框架；（3）弥合差距；（4）参与；（5）寻找价值；（6）信任。家长体验的核心是保护孩子的身份和个人自我。评估在任何阶段都可能引起情绪上的困扰。积极地代表孩子并强调可能性被认为是至关重要的。家长的参与程度从被忽视的旁观者到成为评估的发起者不等。当评估与家长的方向和家庭背景相关时，基于证据的评估是有价值的。研究人员的解释性描述产生了一个方案和隐喻——协作评估的方向盘。
对诊断和评估采用基于优势的方法至关重要。由此产生的解释性描述可能有助于卫生专业人员使基于证据的评估实践与以家庭为中心的护理保持一致。
脑瘫患儿的家长描述了在循证评估和诊断过程中必须保护孩子的身份和代表性以及自己的个人福祉。让家长参与循证评估过程并采用基于优势的方法至关重要。所开发的解释性描述——协作评估的方向盘——可能有助于卫生专业人员以符合以家庭为中心的护理原则的方式实施基于证据的评估工具。
