Background: Dementia is a progressive and terminal illness. Symptoms are present for people with dementia across all stages, leading to poor quality of life and considerable carer burden. In acute and community care services, no holistic, person-centred outcome tools are available for nurses and informal caregivers to measure symptoms and needs from the person`s with dementia point of view.
View Article and Find Full Text PDFPalliat Care Soc Pract
December 2024
Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.
View Article and Find Full Text PDFBackground: People in receipt of community palliative care usually receive care from a range of services and require access to care 24/7. However, care outside of normal working hours varies, with little understanding of which models of care are optimal.
Aim: To identify and characterise current models of out-of-hours community palliative care in the UK and explore healthcare professionals' views on the barriers and facilitators to providing high quality community out-of-hours care.
Objectives: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.
Methods: An online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people's cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care.
Results: 91 units/centres returned a survey (37% response rate).