Clinical Research

Many families now perform specialist medical procedures at home. Families need appropriate training and support to do this. The aim of this study was to evaluate a library of videos, coproduced with parents and healthcare professionals, to support and educate families caring for a child with a gastrostomy. This work is in partnership with OUHT and Oxford University. This research was was also supported by families from Helen & Douglas House and our team of doctors. A team of parent representatives, researchers and healthcare professionals from the hospital and community have been involved in creating these videos. Earlier in the project we did a survey with 150 families to understand their experiences of training and what types of videos would be most helpful. You may have taken part in this. Key things we learnt from the survey:

• Families wanted both healthcare professionals and parents to feature and that they wanted some videos to be filmed at home and to show "real life".
• Families wanted help with managing common problems.
• Families valued advice and tips from more experienced families.

The research helped to aid learning not just with other parents, but also with the healthcare professionals too with 73% of them responding to say it helped them. One mother commented "Although I had read through the leaflets I think having the videos allows us to visualize what the different terms mean, which is so helpful for making sense of, and retaining, the information." Healthcare professionals too commented on new learning, for example, learning more about treatments for granulation tissue: "Granulation is always a difficult one to resolve so good to know the favoured 5 steps the CNS (clinical nurse specialist) suggests with confidence" You can read more about the research itself, the evaluations and watch the videos themselves from the links on the right.  

Addressing the current gap in quality research in paediatric palliative care requires a shared and collaborative response between the academic and paediatric palliative care sector. The aim is to provide a UK wide Collaborative Paediatric Palliative Care network that will foster and assist the sectors to work alongside one another to deliver national high-quality research studies. The vision of CoPPAR is that it will become the single point of information for all pediatric palliative care research across the UK that can be accessed by researchers, clinicians, parents and young people, and policy makers to enable more effective and efficient delivery of research in this sector.

Difficult decisions are often faced in clinical settings, especially where children are being treated. Sadly, in some cases, differing opinions about care or treatment can result in conflict between families and the clinicians treating their children. These conflicts can have a deep and long-lasting impact on all parties. True Colours is delighted to be working with the Medical Mediation Foundation on an exciting initiative to embed the use of conflict management and mediation skills within clinical teams. This three-year project sees MMF working with three specialist UK hospitals to train staff in how to recognise and manage potential conflicts between families and health professionals. The hospitals involved are Leeds Children’s Hospital, Newcastle’s Great Northern Children’s Hospital and the Oxford Children’s Hospital/ Helen & Douglas House Hospice for Children. Since April 2021, MMF have delivered 90 training session to 480 health professionals. Of these, 95% said the training was "very relevant". Our doctors and care staff look at children's conditions and treatments as a whole, taking into account what is important for the child and the family so we can give them the best care.

C-POS aims to develop, validate, and implement a person- and family-centred outcome measure that can be used by CYP and their families affected by LLLTC. The study will identify CYP, family, professional and commissioner priority concerns and outcomes in paediatric palliative care, which will be used to inform item generation and initial measure development. The C-POS will be the first fully validated children and family centred outcome measure for use in paediatric palliative care. The study brings together families, researchers, health and social care professionals and champions children’s voices in the research, rather than relying on proxy data. The tool will be implemented into routine clinical practice which if used regularly to measure and document change in patient’s status, can inform and improve care for children and young people with life-limiting and life-threatening illnesses.

This is an upcoming research study examining the best way to measure breakthrough pain in children already taking regular pain medicine. Breakthrough pain is the discomfort experienced when the symptom is temporarily worse than the existing medication can deal with and needs rapid treatment with top-up medication. Interviews will take place with young people, and their parents / carers, leading to the development of a tool, which will then be reviewed by patients, parents and healthcare professionals. The work involves several other specialist centres and is funded by Great Ormond Street Hospital Charity, and took place over an 18 month period (2022-2024). Outcomes: Despite all efforts made, there is still no consensus on the definition of breakthrough pain. A compromise is needed on the vocabulary of breakthrough pain in order to collect reliable incidence and prevalence data.

Research project from Together for Short Lives (TfSL) and the Association of Paediatric Palliative Medicine (APPM) for identifying ways to support and develop those undertaking or considering doctoral studies concerning children and young people with life-limiting and life-threatening conditions and those who provide care and support to them.

The aim of this research was to describe the nature and causes of reported patient safety incidents relating to care in the community for children dependent on long-term ventilation with the further aim of improving safety.

When a child is diagnosed with a life-threatening condition, one of the most challenging tasks facing health-care professionals is how to communicate this to the child, and to their parents or caregivers. This paper reviews the effect of communication on children's emotional, behavioural, and social functioning, as well as treatment adherence, disease progression, and wider family relationships.

This review will inform understanding of symptom management in ICYP at end-of-life.

The use of long-term ventilation (LTV) in children is growing in the UK and worldwide. This reflects the improvement in technology to provide LTV, the growing number of indications in which it can be successfully delivered and the acceptability of LTV to families and children. This article discusses the various considerations to be made when deciding to initiate or continue LTV, describes the process that should be followed, as decided by a consensus of experienced physicians, and outlines the options available for resolution of conflict around LTV decision making.

Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. This paper defines and describes one model for providing perinatal palliative care, drawing on the personal and professional experience of the authors.