The burden of care

This expression was coined by Tizard and Grad(5 to describe the extra work and responsibility that parents of children with severe handicaps have. Comparison with normal children of the same age, younger children with a similar developmental stage, or children with a variety of different handicaps have been used to understand the contribution of this burden to the well being of the parents and family as a whole. Questions arise about whether this child or this problem means less opportunities for holidays for the rest of the family, whether it impairs their social life or recreation, whether a good marriage is deteriorating, whether the parents are suffering from physical exhaustion or preoccupied with financial worries. Most useful are diary methods, sometimes supplemented by periods of direct observation. Developmental delay in itself—a child taking longer to walk, failure to acquire bowel or urinary control—would bring physical exhaustion and financial worries. However, problems such as these can be ameliorated by the provision of appropriate aids such as a buggy of the right size, and the design and supply of free disposable nappies, so that these problems do not intrude on family life as much as might be expected. Additional handicaps can greatly increase the burden of care. Major physical disability and increasing weight is a straightforward explanation of the common problem of backache in the parents. Speech delay does distress parents who often say, 'If only I could get through to him'. Lack of or distortion of communication is associated with behaviour problems, which are by far the most destructive influence on the well being of all the family members, impeding their functioning across all aspects of social, financial, recreational, and private life. Major disorders of sleep often associated with disturbed behaviour during the day are particularly destructive to the relationship between the parents, who sometimes take turns to sleep or sit up with their child for years on end.

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