Evaluation of the Paediatric Home-based Palliative Care Service

Copyright © Centre for Public Health Research, University of ChesterPalliative care has been recognised as a medical speciality since 1987 (Hynson & Sawyer, 2001). However, it remains relatively underdeveloped in the paediatric setting, and there has been little research carried out in the area. One reason for this may be the nature and challenge of surveying caretakers about a highly emotive and painful subject (Hynson & Sawyer, 2001). However, as Dangel, Fowler-Kerry, Karwacki, and Bereda (2000) suggest, ongoing programme evaluation is a necessary component to improve the quality of service delivery. Research is required in all aspects of palliative care in order to ensure that this relatively new speciality can move forward from an anecdotal basis to one that has a sound evidence base (Twycross & Dunn, 1994). The most distinctive feature of palliative care is its divergence from most other types of medical care: the aims are different to that of curative care and thus create different priorities. Palliative care focuses on relieving pain or the symptoms of a disease or disorder without effecting a cure (World Health Organisation [WHO], 2005). As such palliative care aims to preserve normality as far as possible; for the great majority of children and young people, this means delivering care in the home (Watterson & Hain, 2003). In this setting, parents play a key role in decision making as they are involved in the day-to-day management of their child's symptoms (Dangel et al., 2000)