McCann Damhnat, Bull Rosalind, Winzenberg Tania
School of Nursing and Midwifery, University of Tasmania, Launceston, Tasmania, Australia.
J Child Health Care. 2012 Mar;16(1):26-52. doi: 10.1177/1367493511420186. Epub 2012 Feb 3.
The aim of this systematic review was to critically examine the research that quantifies and describes the daily patterns of time use by parents of children with complex needs. Four electronic databases were searched. A total of 32 studies (30 peer-reviewed journal articles and two theses) met the inclusion criteria. Three key findings emerged from the review: (a) Parents of children with complex needs carry a significant caregiving burden that often does not reduce as the age of the child increases, (b) supervision or 'vigilance' is a category of childcare that carries a particular time requirement for these parents and (c) parents of children with complex needs spend (sometimes considerable) time undertaking health care-related tasks outside the 'normal' parenting role. The time demands placed on parents caring for a child or children with complex needs at home should be considered when health professionals are negotiating essential and/or additional therapies or treatments to be included in a child's home care regime.
本系统评价的目的是严格审查量化和描述有复杂需求儿童家长日常时间利用模式的研究。检索了四个电子数据库。共有32项研究(30篇同行评审期刊文章和两篇论文)符合纳入标准。该评价得出了三个主要结果:(a)有复杂需求儿童的家长承担着巨大的照料负担,且这种负担通常不会随着孩子年龄的增长而减轻;(b)监督或“警惕”是一类育儿工作,对这些家长来说有特定的时间要求;(c)有复杂需求儿童的家长在“正常”育儿角色之外还需花费(有时是大量的)时间承担与医疗保健相关的任务。当健康专业人员协商将基本和/或额外的治疗纳入儿童家庭护理方案时,应考虑在家照顾有复杂需求儿童的家长所面临的时间需求。