Published on the BBC website:
New research has found that allowing newly bereaved parents to have extended time with their baby or child is highly valued and has lasting impacts.
For further information, the full press release can be read at:- New research suggests bereaved parents need extended time with their children
The Martin House Research Centre team have been awarded a partnership grant from the NIHR to develop the collaborative UK wide paediatric palliative care research network (CoPPAR). Working with colleagues at the University of Leeds, Kings College London, the Hull York Medical School, and University College London, we will develop a network of academics and clinical teams that will work together to share experiences and expertise to improve their confidence in undertaking and participating in research studies. This network will be a single point of information, held on the Together for Short Lives website, and accessible to parents, clinicians and academics where they can find out about current and new research studies and how to get involved. Further information can be found here:- CoPPAR Network
Centre Director and Lead for the CoPPAR network, Prof Fraser said “We are really delighted to have been awarded this grant from the NIHR – this is an opportunity for academics, clinicians, parents and young people to work closely together to ensure that all children and families are offered the opportunity to participate in research should they wish to.“
A new paper has been published by researchers a the Centre looking at methods of finding the point of transition from children's to adult healthcare for young people with life limiting conditions. There are many concerns about the transition to adult healthcare for this population, including a lack of continuity in care and reduced ease of access to services such as physiotherapy. However, previous research looking into impacts of the transition has been limited by either using small samples from individual clinics, where transition point is known or - if using routinely collected data on large populations - by using a simple age-cut off between paediatric and adult healthcare, which does not reflect reality as young people may transition at different ages. The published research addressed this problem by developing and assessing methods of estimating the point of transition from routinely collected healthcare records and demonstrated that this approach has the potential to provide better detection of changes in healthcare use caused by the transition.
The NIHR Alert covering the recent paper by Prof Lorna Fraser: ‘Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study’ has now been published and can be view at the link below:-
The risk of severe illness and death from COVID-19, is extremely low in children and teenagers, new research shows.
The study - led by researchers including those from the University of York, UCL, Imperial College London and the Universities of Bristol and Liverpool – also found that catching COVID-19 increases the likelihood of serious illness in those with pre-existing medical conditions and severe disabilities.
The findings will be submitted to the UK’s Joint Committee on Vaccination and Immunisation (JCVI), the Department for Health and Social Care (DHSC)and the World Health Organisation (WHO), to inform vaccine and shielding policy for the under-18s.
The findings were released from three studies which analysed health data.
One study found that 251 young people aged under 18 in England were admitted to intensive care with Covid-19 during the first year of the pandemic (until the end of February 2021).
The researchers, seeking to determine absolute risk, said this equated to young people of that age group in England having a one in approximately 50,000 chance of being admitted to intensive care with Covid-19 during that time.
Looking separately at PIMS-TS*, a rare inflammatory syndrome in children caused by Covid-19, the researchers found that 309 young people were admitted to intensive care with this condition – equating to an absolute risk of one in 38,911.
Researchers also concluded after looking at data for England, that 25 children and young people had died as a result of Covid-19, equating to an absolute risk of death from Covid-19 of one in 481,000, or approximately two in a million.
Professor Lorna Fraser from the Martin House Research Centre in the Department of Health Sciences was senior author on the paper called, “Deaths in Children and Young People in England following SARS-CoV-2 infection during the first pandemic year: a national study using linked mandatory child death reporting data.”
Professor Fraser said: “It’s important to remember that the risks are very low for all children and young people. Even when we found higher risks for some groups with severe medical problems, these risks were still very small compared to risks seen in adults.”
Senior author on two of the studies, Professor Russell Viner from University College London added: “Those young people at higher risk are those who are also at higher risk from any winter virus or other illness – that is, young people with multiple health conditions and complex disabilities. Covid-19 does however increase the risks for people in these groups to a higher degree than for illnesses such as influenza (seasonal flu).
“Our new findings are important as they will inform shielding guidance for young people as well as decisions about the vaccination of teenagers and children, not just in the UK but internationally.”
“It is reassuring that these findings reflect our clinical experience in hospital – we see very few seriously unwell children. Although this data covers up to February 2021, this hasn’t changed recently with the Delta variant. We hope this data will be reassuring for children and young people and their families, ”added author, Dr Elizabeth Whittaker from Imperial College London.
The studies did not look at the impact of long Covid.
The studies are non-peer reviewed and part of a rapid response to understanding more about the SARS-CoV-2 infection:
Parents of children with a life-limiting condition often provide and coordinate all of their child’s care needs. Evidence surrounding the experiences of these parents is increasing, but predominantly focuses on the experiences of mothers. Understanding the experiences and needs of fathers is also important. The MHRC team had a systematic review published (17/06/2021) in BMJ Supportive and Palliative Care (https://spcare.bmj.com/content/early/2021/06/16/bmjspcare-2021-003019) that explored the experiences of fathers of children with a life-limiting condition. It highlighted the uncertainty experienced by fathers throughout their child’s diagnosis and illness, their difficulties in forming relationships with and seeking help from healthcare professionals and role conflict experienced by working fathers. It also highlighted limitations of the current evidence, namely a lack of diversity in father samples. Further research is needed to explore the impact of fathers’ experiences on their own health and well-being and should aim to include a diverse range of fathers, including those with primary caregiving roles.
How parents are supported immediately following the death of a child can have a profound impact on how they respond and adjust to their new reality. In this blog written for Together for Short Lives to mark Dying Matters week our Researcher Fellow, Dr Julia Hackett explores how providing cooling facilities to extend the time before a child’s body is transferred to a funeral director/funeral can have a beneficial effect on how parents start to accept the reality of their child’s death.
Link to full blog:-
The Martin House Research Centre’s second biennial research conference on the care and support of children, young people, and young adults living with a life-limiting condition and/or medical complexity was held virtually on 16th April 2021. We were delighted to have a total of 206 attendees over the course of the day. The conference opened with a fantastic introduction from Professor Lorna Fraser, the centre’s Director; Dr Anne Marie Childs, a Trustee from Martin House Children’s hospice; and Naveed Hafeez, a young adult with complex health needs. Naveed had written, directed and produced a powerful video, on the importance of PPI in research – which really set the tone for the day.
Plenaries and rapid reports with Q&A sessions, showcased a range of exciting completed and ongoing work within paediatric palliative care research across the globe, spanning all aspects of the care and support of children and young people and their families. It was great to see and hear presentations from a range of academics and practitioners, from PhD students to those more established in the field. The Q&A sessions provided a space for discussion and it was interesting to see how questions from the audience provided an opportunity to consider the implications of findings and how there were commonalities in the issues identified and experienced. This emphasised the need for multidisciplinary research and research teams, which include experts by experience.
One of the aims of the conference was to develop delegate’s knowledge and understanding on Patient and Public Involvement (PPI) across the research process. Parents from the research centre’s Family Advisory Board (FAB), which is at the heart of the work showcased by the centre, described how good PPI takes time to build relationships, commitment and trust. They stressed how important it has been for them to be involved in all aspects of the research process, so that their experiences of what went well can be shared, and what did not go so well can be changed. They felt that this in turn improves the relevance, quality and impact of the research. A strong message from the FAB was the importance of being involved in research that goes towards change and not just research for research’s sake.
Common themes throughout the day brought to the forefront a range of learning lessons for both academics and practitioners. Presentations discussed how the importance of individualised care and choice for families in the care of their child after death, is as important as before they die; the experiences and support for black and minority ethnic group children with life-limiting conditions; how a person’s experience at diagnosis frames their whole experience/journey, and therefore the importance of the language and labels which are used; the increasing expectations being put upon parents as carers; and the need and development of a palliative care outcome scale for children, and a patient-reported experience measure.
For all researchers throughout the day, it was clear that at the forefront of their work was the commonly held belief that research should be done to provide an evidence-base for practice, which improves the experiences, care and support for these children and young people and their families. On behalf of the Centre, we would like to thank all those who attended the conference and we look forward to hosting our third biennial conference in 2023.
Fully @ChectUK funded University of York PhD studentship to develop a psychoeducational intervention for teenagers and young adults with retinoblastoma with Dr Bob Philips at @drbobphillips and Dr Jo Taylor at @UoYmhrc - apply by 3rd May 2021 using the link below:-