Parental guidance and counselling by doctors and nursing staff: parents' views of initial information and advice for families with disabled children

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This paper describes changes that have taken place, over a period of 10 years, in the way physicians and nursing staff in Finland give initial information and advice to the parents about their child's disability. It also discusses the association between quality of information given and parents' feelings of insecurity or helplessness.

In the study, we compared the experiences of parents of older (aged 12-17) disabled children with those of parents with younger (aged 7-9 years) disabled children. There were 85 children, whose disabilities were either learning or physical, or, in a few cases, both.

Parents completed a questionnaire and were interviewed by a social worker.

According to these reports, the initial information and advice received by the parents with younger children about their child's disability and its treatment, and on coping with the child at home, was better than that received by the parents of the older children. The parents of the younger children also reported feeling better prepared to take care of their child.

Those parents who reported having received little information and practical advice on coping with their child at home experienced feelings of insecurity and helplessness five times as often as those who were satisfied with the information and advice.

Feelings of being poorly prepared to take care of their child at home were reported four times more often by dissatisfied parents than by satisfied parents.

More attention should be paid to the manner in which information is given to parents, and doctors and nurses need to develop better ways to support parents and facilitate their adaptation.

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