Clinical Research

Specialist paediatric palliative care is a relatively new area of paediatrics, and the interface with other disciplines can occasionally pose challenges for referrers due to lack of information about the diverse services available. Although services vary on a regional basis, there are common principles which may be used to guide and support referrals. This research aimed to clarify the role of specialist paediatric palliative care, identify who should be eligible for such care, describe the services available (including those from children's hospices) and provide a tool for assessing some of the most challenging referrals.

This research study was conducted to identify and explore the educational needs of children's hospice doctors in England.

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.

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.

Helen & Douglas House hospice for terminally ill babies and children opened in November 1982. This article looks at the first year of the hospice and how it helped many children in the community.

Many families now perform specialist medical procedures at home. Families need appropriate training and support to do this. Similar coproduced educational materials are needed to support families who perform other medical procedures at home.

Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. The aim of this review was to systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice.

Increasing numbers of children with complex health-care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home.

The aim of this study was to explore family carers’ experiences of training and ongoing support for caring for their child’s gastrostomy, and to get their views on how this could be improved.

Joint research with Together for Short Lives and Association of Paediatric Palliative Medicine into the managing and sharing of research data in children’s palliative care.

Breakthrough pain (BTP) is common in cancer and other conditions yet there is a lack of validated BTP measurement tools. The aim of the review was to identify all tools assessing or characterising BTP in patients of any age with any condition, and to critically appraise their psychometric properties.