The bricoleur: Rechoreographing lives, rewriting the master script. The phenemomenon of mothering as described by Mothers of children living with spastic cerebral palsy.

Aim: The aim of this study was to explore the phenomenon of mothering a child with spastic cerebral palsy through the lens of the Mother. The study is situated within an Australian, regional environment. Methodology: The methodology underpinning this inquiry was that of Descriptive Phenomenology in the tradition of Edmund Husserl. Method: Information was gathered through the use of face-to-face interviews complemented by the use of photo, olfactory, tactile elicitations, and the use of soundscapes. Building on the works of Edwards and Welch (2011) an extension of Colaizzi’s (1978) method of data analysis (1978) informed the analysis process. Results: Ten themes were explicated through the process of analysis: Phoenix arising; Normality; Facing the abyss; Keeping all the balls in the air; Struggling with Self-identity; Being judged and disempowered; The imposition of the medical model; Being re-traumatised; On a positive note, and Letting it all out. Conclusion: This study revealed a spectrum of positive, negative, and cathartic experiences. The cathartic process, achievements of mothers, and acknowledgement of their dedication to raising their child, are highlighted within this research. Implications and recommendations in relation to clinical practice, policy review, and future research are presented to address issues of concern arising from the study. Priority recommendations include changes to policy perspectives and audit recommendations for NDIS and enhancing the role of Nurse Navigators. Recommendations for future research include new methods in working with vulnerable populations and sensitive information and further implementation of the novel Distress- Redirect, Opt-out Protocol (DROP).研究目的：本研究旨在从母亲的视角，探讨养育痉挛型脑瘫（spastic cerebral palsy）患儿的母亲所经历的养育现象。本研究的研究场景设定于澳大利亚某区域环境中。 研究方法论：本研究采用遵循埃德蒙德·胡塞尔（Edmund Husserl）学术传统的描述现象学（Descriptive Phenomenology）作为核心方法论。 研究方法：本研究通过面对面访谈收集研究资料，并辅以照片采集、嗅觉启发调研、触觉启发调研以及音景（soundscapes）录制。本研究借鉴爱德华兹与韦尔奇（Edwards and Welch, 2011）的研究成果，采用经扩展的科莱齐（Colaizzi, 1978）数据分析方法指导整个分析流程。 研究结果：经分析过程共提炼出10个核心主题：涅槃重生、对常态的追寻、直面深渊、统筹兼顾各类事务、自我认同的挣扎、遭受评判与权力剥夺、医疗模式的强加、再度遭受创伤、积极面向与情绪宣泄。 研究结论：本研究揭示了涵盖积极、消极与宣泄性的多元体验谱系。本研究着重凸显了母亲群体的宣泄过程、所取得的养育成就，以及对她们为抚育患儿所付出的奉献的认可。本研究针对临床实践、政策审议与未来研究方向提出了相关启示与建议，以应对本研究中发现的各类关切问题。优先建议包括调整政策视角、针对国家残障保险计划（National Disability Insurance Scheme, NDIS）提出审计优化建议，以及强化护士导航员（Nurse Navigators）的角色职能。未来研究建议包括探索面向脆弱群体与敏感信息的新型工作方法，以及进一步推广创新的"痛苦引导-退出协议（Distress-Redirect, Opt-out Protocol, DROP）"的应用实践。