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.

Coproducing a library of videos to support families caring for children with gastrostomies: A mixed-methods evaluation with family carers and clinicians.

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.

Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice.

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.

The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’.

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.

Training and support for caring for a child’s gastrostomy: a survey with family carers.

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.

Managing and sharing research data in children’s palliative care: Risks, benefits and imponderables.

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.

A Systematic Review of Measures of Breakthrough Pain and Their Psychometric Properties.

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.

Development of a research-based classification of approaches to paediatric palliative medicine service provision within children’s and young adults’ hospices: A mixed methods study.

Globally, pioneers in children’s palliative care influenced this speciality’s development through individual initiatives leading to diverse models of care. Children’s and young adults’ hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. The aim of this study was to describe and classify existing approaches to paediatric palliative medicine in children’s and young adults’ hospices across the UK.

Healthcare Professionals’ Experiences of the Barriers and Facilitators to Pediatric Pain Management in the Community at End-of-Life: A Qualitative Interview Study.

Inadequate pain management in community pediatric palliative care is common. Evidence to inform improved pain management in this population is limited. The aim of the study was to explore the barriers and facilitators to pediatric community-based pain management for infants, children and young people at end-of-life as perceived by healthcare professionals.

Diamorphine pharmacokinetics and conversion factor estimates for intranasal diamorphine in paediatric breathrough pain: systematic review

Intranasal diamorphine is a potential treatment for breakthrough pain but few paediatric data are available to assist dose estimation. The aim of the review was to determine an intranasal diamorphine dose in children through an understanding of pharmacokinetics.

A mixed-methods systematic review and meta-analysis of barriers and fascilitators to paediatric symptom management at end of life

Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. The aim of the review was to investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life.

A protocol for a systematic review and meta-analysis to identify measures of breakthrough pain and evaluate their psychometric properties

Breakthrough pain is common in children and adults with cancer and other conditions, including those approaching end-of-life, although it is often poorly managed, possibly partly due to a lack of validated assessment tools. This review aims to (1) identify all available instruments measuring breakthrough pain in infants, children, adolescents or adults and (2) critically appraise, compare and summarise the quality of the psychometric properties of the identified instruments using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria.

Healthcare professionals’ views of the use of oral morphine and transmucosal diamorphine in the management of paediatric breakthrough pain and the feasibility of a randomised controlled trial: A focus group study (DIPPER)

Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. The aim of this study was to explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial.