BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely…
Background: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best…
BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely…
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been…
The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using…
The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research…
