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Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often distressing job of obtaining that help. They were asked whether they regarded anyone as their co-ordinating cornerstone carer and which qualities of care they most valued. Over three-quarters identified one or more professionals as their cornerstone carer, the most common being paediatricians, domiciliary paediatric nurses and social workers. Nearly a quarter of the families reported not having a cornerstone carer. The ingredients of care especially valued by the parents are described. Families may be better helped and services more rationally used where a cornerstone carer gives support and helps to co-ordinate care in a way that leaves families still feeling in control of their own lives. The issue is raised as to whether patient need or cost/service limitation will be the primary determinant of the way this care is delivered in Britain.

Original publication




Journal article


Dev Med Child Neurol

Publication Date





216 - 224


Adaptation, Psychological, Brain Diseases, Child, Continuity of Patient Care, Family, Grief, Home Nursing, Hospices, Humans, Neuromuscular Diseases, Patient Care Team, Professional-Family Relations, Public Assistance, Sick Role, Social Support, Terminal Care