The child with multiple impairments.

The child with multiple impairments The World Health Organization defines a child with multiple impairments as a child with a significant physical disability combined with a sensory and/or cognitive disability (1). Such a child may place tremendous stress on a family because of the many associated issues and the fact that, in most cases, the child has a chronic condition with no cure. The objective of this statement is to address the role of the paediatrician or family physician in caring for children with multiple impairments and their families. This role includes: interpreting the diagnostic findings of the multidisciplinary team to the family; responding to the child’s changing needs as he or she ages; providing continuity of care in a family-centred context; collaborating with the entire family; delivering care in the community; coordinating care between the members of the multidisciplinary team and community-based services; and empowering family members to become active partners with professionals so that parents can act as decision-makers, and problem solvers who are able to make informed and appropriate choices. Comprehensive care begins with a thorough evaluation of the child and family. The child’s etiological and secondary conditions, as well as contributing environmental factors, should be identified through a history taking, medical examination and pertinent laboratory analyses. The medical assessment should include a standardized evaluation of development to identify the child’s functional status in the areas of general intelligence, gross and fine motor skills, language, and social adaptation. Many children with multiple impairments experience ‘comorbidity’ with behavioural or psychological problems (2). The diagnosis should be explained to the family, with the understanding that family members may grieve for the loss of the ‘ideal’ child. Initial parental reactions may include denial, sadness, anger and guilt. Gaining the confidence and active participation of the family in the child’s medical care is a long process, and it is essential to foster this involvement. Medical information often needs to be delivered repetitively because family members may not hear or absorb it all at the time of diagnosis. Ongoing support is crucial to these families; they incur increased expenses, which are aggravated frequently by the loss of income. Family life becomes more isolated. The physician should acknowledge that the parents of a child with multiple impairments face a recurring series of stresses and, at times, may see a doctor when they are unable to cope any longer. Families affected by chronic poverty, low educational levels, parental psychopathology, prolonged separation from an infant in the first year of life, marital discord and divorce, remarriage and step-parenting, a lack of family and community supports, and the lack of structure and rules in the household are at risk for maladaptive adjustment, and will require extra services to foster coping abilities (3). Comprehensive care of the child and family should focus on three main areas (4): anticipatory guidance with an overall tracking plan to be used throughout the child’s infancy, and toddler, preschool and school years until adolescence, and transition to adulthood vocational training and employment; PP 2000-02