The daily patterns of time use for parents of children with complex needs

Abstract

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.