Supporting the whole family: caring for children when a parent is dying

Abstract

With an increasing number of younger adults with a young family being referred to our adult hospice service, there was a noticeable gap in the provision of appropriate support for these children. As a provider of palliative care services for both adults and children, there were opportunities to offer holistic, integrated care designed to meet the individual needs of all our patients.The staffing includes a Play Therapist and a team of Nursery Nurses who had predominantly worked within the children's service in the home setting. However, their skills and expertise were accessible to the whole service, including children of adult patients. A programme was introduced to promote awareness among the adult teams of utilising these staff further. In the first 6 months, the Play Therapist has provided specialist interventions with 14 children of adult patients (not including bereavement support). The Nursery Nurses have so far delivered childcare support with 7 children of 4 patients. These childcare sessions have proved invaluable to the families receiving them; for example, helping at home when the patient has been feeling ill after chemotherapy, or looking after the children to allow other relatives to visit the patient in the Hospice Inpatient Unit. They have also developed therapeutic relationships with the children and enabled a sense of normality and routine at a time when there is a great deal of disruption, including trips out or assistance in accessing regular clubs or groups.Specialist palliative care has always encompassed support for the whole family, not just the patient. The additional support for children has proved beneficial to the families cared for, and the evaluations so far have been extremely positive. There are plans to develop and extend this service in order to meet the holistic needs of this group of adult patients.