Disabled children and their families in Ukraine: health and mental health issues for families caring for their disabled child at home

Soc Work Health Care. 2004;39(1-2):89-105.

Abstract

In the Eastern European countries included in the communist system of the USSR, parents of disabled children were encouraged to commit their disabled child to institutional care. There were strict legal regulations excluding them from schools. Medical assessments were used for care decisions. Nevertheless many parents decided to care for their disabled child at home within the family. Ukraine became an independent country in 1991, when communism was replaced by liberal democracy within a free market system. Western solutions have been sought for many social problems existing, but 'hidden,' under the old regime. For more of the parents of disabled children, this has meant embracing ideas of caring for their disabled children in the community, and providing for their social, educational, and medical needs, which have previously been denied. The issue of disability is a serious one for Ukraine where the nuclear disaster at Chernobyl in 1986 caused extensive radiation poisoning. This almost certainly led to an increase in the number of disabled children being born and an increase in the incidence of various forms of cancer. This paper is based on a series of observation visits to some of the many self-help groups established by parents, usually mothers, for their disabled children. It draws attention to the emotional stress experienced both by parents and their disabled children in the process of attempting to come to terms with the disabling conditions, and the denial of the normal rights of childhood resulting from prejudice, poor resources, ignorance, and restrictive legislation. Attempts have been made to identify the possible role and tasks of professional social workers within this context. International comparisons show that many parents and their children do not benefit from the medical model of disability, and that serious consequences include the development of depressive illness among those who find that little help is available from public services.

MeSH terms

  • Caregivers* / psychology
  • Child
  • Communism
  • Community Health Services / organization & administration*
  • Disabled Children / psychology
  • Disabled Children / rehabilitation*
  • Family Health*
  • Health Services Accessibility
  • Home Nursing*
  • Humans
  • Organizations
  • Self-Help Groups
  • Social Change
  • Social Work
  • Ukraine