Respite care for people with a terminal illness: what do carers want?

In Australia, during the past 15 to 20 years hospice palliative care services have attempted to meet the needs of people who are dying and their families. Much of the focus of care has concentrated on giving people the opportunity to be cared for at home for as long as possible, and to die at home if this is the wish of the patient and family. This descriptive study is concerned with the needs of people who may require respite care when they are caring for a person with a terminal illness at home. The purpose is to investigate what Carers want, in order to use this knowledge to assist with appropriate health care planning. A postal survey of Carers (n=301) who have patients registered with a domiciliary hospice palliative care service was conducted. The questionnaire ascertained the Carer's demographic details, their burden of care, their emotional health and their acceptance and perceptions of ^ respite care. A response of 55% (n=158) was obtained.