Smith Christine H, Graham Carol A, Herbert Anthony R
Paediatric Palliative Care Service, Children's Health Queensland Hospital and Health Service, Brisbane, Queensland, Australia.
Department of Emergency Medicine, Lady Cilento Children's Hospital, Brisbane, Queensland, Australia.
J Paediatr Child Health. 2017 Feb;53(2):173-179. doi: 10.1111/jpc.13324. Epub 2016 Aug 23.
The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this.
A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned.
Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider.
There is disparate provision of respite care with the main perceived barrier to attaining 'ideal respite' being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge.
照料患有危及生命疾病的儿童，会给其家庭带来情感、身体和经济上的压力。临时护理是让照料者在这种护理负担下获得一些缓解和支持的一种方式。在这种情况下，临时护理的提供情况和需求鲜为人知。本次调查旨在描述家庭所接受的临时护理类型、他们理想中希望接受的临时护理，以及阻碍获得这种护理的因素。
昆士兰儿科姑息治疗服务机构照料的34个家庭被邀请参与一项关于他们当前对未来临时护理偏好的20个问题的调查，共收回20份调查问卷。
3个家庭（15%）报告称在过去12个月里未接受过临时护理。接受临时护理的家庭同时接受了正式临时护理（有组织的护理提供者）和非正式临时护理（家人或朋友）。10个家庭（50%）表示他们希望改变临时护理的时间。获得充足临时护理的障碍包括儿童护理的复杂性、经济障碍以及缺乏临时护理提供者。
临时护理的提供情况参差不齐，获得“理想临时护理”的主要障碍是缺乏能够满足其孩子复杂护理需求的提供者。在不同地理位置、医疗状况、社会和文化需求的情况下提供临时护理仍然是一项挑战。
