The parents feel the effects of grief from early on. Despite having moved, often very courageously, through the stages of reconciliation with the news, the sadness and disappointment can continue for many years(4) despite a very positive outlook towards the affected children and the other members of the family.
Informal support from the family or neighbours is much more effective than more formal, professionally led support. Frequent outpatient appointments where little happens are not cost-effective for the family; often the father loses money as he must take time off work and the cost of travel with a difficult baby or toddler is high. Not all can benefit from discussion groups of parents and other mothers find a succession of home visits from a variety of professionals very disruptive. Religion, if it is already an important part of family life, has been shown to be important in maintaining family well being especially in immigrant groups, such as Hispanic people in the United States, and for Indian families, where Hinduism is central to family life and where children have specific roles to play, such as that of sons in parental funeral rites. A child with an abnormality makes many parents look again at their fundamental beliefs, but few make lasting changes. Other families find membership of other groups (sporting, social, or cultural) supportive, provided that the family feel that they and their child are unconditionally accepted.
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