Cook Jason E, Tovin Melissa M, Kenyon Lisa K
Department of Physical Therapy, Baylor University, Waco, Texas, USA.
Department of Physical Therapy, Nova Southeastern University, Fort Lauderdale, Florida, USA.
Phys Ther. 2022 Apr 1;102(4). doi: 10.1093/ptj/pzab294.
The purpose of this study was to explore the lived experience of parents who care for children with cerebral palsy who function at a Gross Motor Function Classification System Level V, their beliefs about pain and non-pain-related emotional distress, and what it means to provide care and comfort.
A phenomenological research design was used. Eleven participants were involved in this study. Pilot interviews informed the interview guide. Data were collected via participant journals and semi-structured interviews and analyzed using van Manen's framework for understanding experience. Trustworthiness criteria were met through a variety of strategies to ensure a rigorous research process.
Four themes were revealed in this study: "life is hard, heavy with burden, worry, and love," "remarkable," "identity transformation and empowerment," and "living a life that is planned, forced with structure and without spontaneity."
Caring for a child with lifelong needs is complex and requires a sensitive awareness of the contextual factors that impact daily decisions and routines. Understanding the lived experiences of parents who care for children with cerebral palsy Gross Motor Function Classification System Level V is necessary to provide psychologically informed, family-centered care. Comfort theory is presented as a framework for understanding what factors influence comfort and well-being. Understanding the complex nature of comfort for an individual can lead to greater understanding and empathy-driven care. These results will provide a foundation for future studies that aim to enhance pediatric physical therapist care through provider empathy and understanding.
Caregiving parent experiences are impactful and play a large role in the life of children with developmental disabilities. Research exploring the lived experience of caregivers may enhance empathy-driven, psychologically informed, family-centered physical therapist care throughout the life course.
If you are a parent who cares for a child with severe cerebral palsy, you have unique experiences that impact day-to-day activities and lifelong planning for your family and child.
本研究旨在探索照顾处于粗大运动功能分类系统V级的脑瘫患儿的家长的生活经历、他们对疼痛及与疼痛无关的情绪困扰的看法，以及提供照料和安慰意味着什么。
采用现象学研究设计。11名参与者参与了本研究。先导访谈为访谈指南提供了依据。通过参与者日志和半结构化访谈收集数据，并使用范曼理解体验的框架进行分析。通过多种策略满足可信度标准，以确保研究过程严谨。
本研究揭示了四个主题：“生活艰难，充满负担、担忧和爱”“非凡”“身份转变与赋权”以及“过着按计划、受结构约束且缺乏自发性的生活”。
照顾有终身需求的孩子是复杂的，需要敏锐地意识到影响日常决策和日常事务的背景因素。了解照顾处于粗大运动功能分类系统V级的脑瘫患儿的家长的生活经历，对于提供基于心理知识、以家庭为中心的护理是必要的。舒适理论被作为一个框架提出，用于理解哪些因素影响舒适感和幸福感。理解个体舒适感的复杂本质可以带来更深入的理解和以同理心为驱动的护理。这些结果将为未来旨在通过提供者的同理心和理解来加强儿科物理治疗师护理的研究奠定基础。
照顾孩子的家长的经历具有影响力，在发育障碍儿童的生活中起着很大的作用。探索照顾者生活经历的研究可能会增强在整个生命过程中以同理心为驱动、基于心理知识、以家庭为中心的物理治疗师护理。
如果你是一位照顾重度脑瘫患儿的家长，你有独特的经历，这些经历会影响日常活动以及你和孩子的家庭终身规划。
