Parents as care managers: The experiences of those caring for young children with cerebral palsy.

摘要

Recent legislation has drawn attention to the increasing number of children with disabilities being cared for at home by their parents (the Department of Health estimates 98.5%). These children meet the criteria for 'children in need' in Part III of the Children Act 1989, and for care management introduced under the National Health and Community Care Act 1990. This study undertaken in the early 90's at the cusp of these reforms, seeks to explore the probable gap between the carefully argued and eminently logical proposals of the Department of Health in their policy objectives for children with disabilities and the practice implications for carers. Existing research in this area has concentrated on the impact of having a disabled child on the family and as a financial liability. Evaluation of community care has been directed towards organisational change and the implications for public spending. The intention here is to examine parents' experiences as care managers of their children's health, education and social care provisions, since consumer experiences are integral to the market philosophy underpinning the reforms. Young children with cerebral palsy have been chosen as an example of a severely disabling condition, and attention has been restricted to children of under 8 in the north London area. The research methods used are direct, non-participatory child observation, a postal questionnaire and semi-structured interviews. In total, 58 families participated in this study. In addition, facilities in 3 London boroughs and 2 specialist treatment centres were examined in depth. The findings are discussed in 4 sections (cerebral palsy as a disabling condition, health, education and personal social services) in accordance with the Children Act Guidance Volume 6, which emphasises the contribution of each of these areas and the need to take into account interdisciplinary collaboration. As there is a wide-ranging, relevant literature crossing many professional disciplines and subject areas, literature reviews are included in each of the sections. In conclusion, the findings are discussed in relation to improving service provision; future research potential, and the training needs of professionals involved in 'normalising' the lives of children with cerebral palsy and their families.