Clinical Research

Helen & Douglas House has been involved in a number of research projects over our 40+ year history.

Helen & Douglas House has been involved in a number of research projects over our 40+ year history. These have focused on understanding and improving patient and family experience of receiving care, including pain management, support for children with feeding tubes, and spiritual care needs. We believe that our patients have an equal right to care based on the experience of their own peers. This is likely to be safer and to better meet their individual needs.

A survey of signs, symptoms and symptom control in 30 terminally ill children

The notes of 30 terminally ill children with various diagnoses were searched for reports of symptoms that had occurred during their last month of life. All had stayed at Helen House, a hospice for children, for part or all of that time. The results were analysed for symptom frequency and resistance to treatment.

Medical and nursing problems of children with neurodegenerative disease.

Little is written on the management of problems encountered by children with neurodegenerative disease. Whilst the conditions are individually rare, as a group of diseases they pose a considerable burden on the child, the family and the community. This study describes the 127 children with neurodegenerative disease who were admitted to Helen House, a hospice for children, from the time of opening in November 1982 until the end of 1993.