Stress and coping in families caring for children with severe mental handicap

The thesis presents a longitudinal study of a representative sample from two health districts of 200 children with severe mental handicap and their families. The broad aim of the study was to investigate the impact on family functioning of caring at home for a child with mental handicap. We adopt a life-span perspective. First, the skills, behaviour and abilities of the children were assessed at school or social education centre by trained interviewers who questioned the teacher or care assistant who knew each child best. Secondly, the person responsible for the day-to-day care of the child (usually the mother) was interviewed using a structured questionnaire. Three years later, 178 children were reassessed and their carers reinterviewed. The study examines key points in the child’s and family’s life cycle. We discuss parents’ reactions to and satisfaction with the way the news of the handicapping condition was first given; the child, family and social factors associated with caring for a young handicapped child which make mothers vulnerable to stress; the effects on family functioning; and the impact on the parents’ marriage. We investigate the child, environmental and social correlates of child behaviour problems and present a longitudinal analysis showing the antecedent risk factors for poor outcome. We examine sleep disturbance, a particularly stressful aspect of child behaviour, and show that poor communication skills play a critical role in the development of disturbed sleeping patterns. We present a longitudinal analysis of maternal stress and coping, identifying the child variables and coping resources which predict change in maternal stress over time. Finally, we focus on the transition to adult life of the teenagers in our sample, examining the differences between them and the younger children, the particular concerns of their mothers, and the preparation given at schools and social education centres in the development of skills for independent living. Throughout the thesis we draw attention to both theoretical and practical issues.