Abstract

A retrospective study was undertaken of 25 families and their 26 ill children attending the first children's hospice in the United Kingdom. The study examined the family's perceptions of the care offered and the impact of chronic and life threatening illness. Eighteen (72%) of the families felt they had been well supported by the hospice and valued the family like atmosphere, perceiving the staff to be friendly, approachable, and helpful. The actual nature of hospice care, in an environment with other terminally ill children, was, however, considered a drawback for a few families. A number of families still had unmet needs, notably appropriate child minding when away from the hospice. The impact of chronic life threatening illness on the families was substantial. The parents (particularly the mothers), the index children, and their siblings all experienced much higher levels of psychological symptomatology than would have been expected from normal samples. While families felt greatly helped over symptom control, a proportion remained very worried about certain symptoms, particularly breathlessness, seizures, and pain. A high proportion of families were experiencing financial and employment difficulties as a result of their children's illnesses.