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.
End of life care for infants, children and young people with life limiting conditions: summary of NICE guidance
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a life limiting condition and entails planning for the future.
Read moreThe Spectrum of Children’s Palliative Care Needs: a classification framework for children with life-limiting or life-threatening conditions
This paper examined the potential of a new classification framework, The Spectrum of Children's Palliative Care Needs, to facilitate identification of children with palliative care needs for the purposes of minimum data set collection and population needs assessment.
Read moreThe characteristics and experiences of anticipatory mourning in caregivers of teenagers and young adults
This article reports a systematic review of literature undertaken to identify characteristics and experiences of anticipatory mourning in caregivers of teenagers and young adults with life-limiting or life-threatening conditions. This review focused on six studies that met inclusion criteria and reported characteristics of anticipatory mourning in caregivers of teenagers and young adults. Characteristics and experiences were sorted into four main themes: symptoms; a sense of loss; caregiver behaviour; and the unique experience of caring for, or losing, a teenager or young adult. The review suggests that there are characteristics and experiences of anticipatory mourning that are unique to caregivers of this age group.
Read moreRealistic nurse-led policy implementation, optimization and evaluation: novel methodological exemplar
Health policies are increasingly complex, involve multiple Government departments and frequently fail to translate into better patient outcomes. Realist methods have not yet been adapted for policy implementation. The aim of this research was to report the first large-scale realistic nurse-led implementation, optimization and evaluation of a complex children's continuing-care policy.
Read moreJourney from paediatric intensive care to palliative care
Approximately two-thirds of patients who die in the pediatric intensive care unit (PICU) do so following withdrawal of intensive care treatment. Most often when intensive care treatment is withdrawn, the child remains in the PICU for end-of-life care. This study aimed to examine the process of referral over a 6-year period of children from a PICU to children's hospices for end-of-life care.
Read moreLearning from paediatric palliative care: lessons for adult practice
A research study into the learnings from palliative paediatric care and the transition from child to adult practice.
Read moreTotal pain: a reflective case study addressing the experience of a terminally ill adolescent.
The research demonstrates how the care delivered by local services was informed by UK strategies for palliative and oncological care of young people.
Read moreHow and when to refer a child for specialist paediatric palliative care
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.
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