The Contribution of Voluntary Organizations to the Care of Children with Life-limiting Incurable Disorders and their Families

Abstract

A national postal survey of voluntay organizations providing for children with life-limiting incurable disorders (n = 147) is described. The majority of organizations originated from the motivation of parents or care workers in response to deficiencies in service provision from other agencies. A wide variety of services were available from the organizations with over half providing an information service, emotional support and counselling, patient and family support and a telephone helpline. The provision of some services, for example respite care, was, hoverer, associated with the size of annual budgets. Publicity, referral and funding arrangements are also discussed. The role of voluntary organizations as partners in care with statutory agencies is discussed in the light of instability of funding arrangements and the use of health and social work staff as the main source of information about voluntary services to parents. Areas of further research in this field are suggested.