Hemsley Bronwyn, Balandin Susan, Togher Leanne
Discipline of Speech Pathology, The University of Sydney, New South Wales, Australia.
Disabil Rehabil. 2008;30(23):1759-71. doi: 10.1080/09638280701645474.
The aim of this study was to explore the perceptions of adults with cerebral palsy and complex communication needs (CCN) on the roles and needs of their family carers in hospital.
As part of a larger study we conducted one focus group with six adults with cerebral palsy and CCN who participated in the group using a variety of augmentative and alternative communication methods.
Participants explored why and how family carers become involved in care in hospital, what this care involves, and how this impacts upon themselves as patients and on their family carers. Reasons underlying their dependence upon family carers during a hospital stay were outlined, particularly the carer's role in communication, information exchange and access to essential daily care. Strategies to improve the experience for family carers in hospital were discussed.
Involvement of family carers of people with cerebral palsy and CCN during an inpatient hospital stay is complex. Although they depend upon others for communication support, these individuals with CCN wish to be treated as adults in hospital and included in decisions about their healthcare. They want to be involved in the education of hospital staff, and to communicate directly with hospital staff.
本研究旨在探讨患有脑瘫且有复杂沟通需求（CCN）的成年人对其家庭照顾者在医院中的角色和需求的看法。
作为一项更大规模研究的一部分，我们与六名患有脑瘫且有CCN的成年人进行了一次焦点小组讨论，这些参与者使用了多种辅助和替代沟通方法参与该小组。
参与者探讨了家庭照顾者为何以及如何参与医院护理、这种护理包括哪些内容，以及这对他们作为患者自身以及对其家庭照顾者有何影响。概述了他们在住院期间依赖家庭照顾者的原因，特别是照顾者在沟通、信息交流和获得基本日常护理方面的作用。讨论了改善家庭照顾者在医院体验的策略。
患有脑瘫且有CCN的人的家庭照顾者在住院期间的参与情况较为复杂。尽管他们在沟通支持方面依赖他人，但这些有CCN的人希望在医院中被当作成年人对待，并参与有关其医疗保健的决策。他们希望参与对医院工作人员的教育，并直接与医院工作人员沟通。
