The family and other carers

Disturbance arises in the setting of a system of care which includes not only the family but also the staff of other placements, whether day or residential, educational or occupational. Its management will depend on the way these people perceive mental retardation and its care, their attitudes deriving from both past experience and present relationships (Fig 1). A great deal depends on how far they feel supported and assured in their roles, as much by each other as by the available system of care. For example, a mother or a teacher who is told consistently that, whatever it was that went wrong, it was her fault, is unlikely to cope confidently.

Fig. 1 The start of disturbance: factors influencing behaviour.

Disability or disturbance hinders normal developmental experience, reducing the opportunities to be taught. Effective parenting skills may have never been learned or else have been destroyed by a child's atypical response. These may need to be taught to carers who have often been demoralized or deskilled. They include how to engage socially with the person, to play with them, to give clear and understandable instructions, and how to divert rather than confront them. Disturbance may reflect boredom and be reduced merely by an increase in the amount and variety of activities. Any approach must take a broad view for carers have to work together comfortably enough to be consistent over time. A treatment programme may have to address the relationship between the carers as well as their needs. This may be sufficient in itself, improvement in the patient following an overall improvement in functioning in the family, school, or residential placement.

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