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:-
The death of a child is an acutely distressing experience. Evidence on the benefits and value to parents of spending time with their dead child following their death, means this is now integrated into routine practice. UK children’s hospices have a tradition of offering parents opportunity to use cooling facilities (cold bedrooms/blankets/cots) to extend this time by slowing deterioration of the body.
A new national study published by the Martin House Research Centre surveyed policies and practices regarding the usage of cooling facilities in UK children’s hospices and explored directors of care’s views on the purpose of cooling facilities and the rationale for hospice specific practices.
Cooling facilities are a core element of UK children’s hospice provision. Directors of Care believed that cooling facilities provide families with the time to say goodbye and support early grieving processes. Challenges for staff were also reported. However, take-up, access and practices varied between hospices. Further research is required to support evidence informed practice. The second stage of this research, a multi-site qualitative study of bereaved parents’ experiences of using cooling facilities, addresses these evidence gaps.
‘Cold bedrooms’ and other cooling facilities in UK children’s hospices, how they are used and why they are offered: A mixed methods study – Julia Hackett & Bryony Beresford. Palliative Medicine, 11th January 2021.
To download the full paper, click below:-
A new study by the Martin House Research Centre has highlighted the key barriers to the development of a managed clinical network (MCN) for children’s palliative care.
Managed clinical networks are professional networks that seek to shift the emphasis of care from buildings and organisations to services and patients. They have been recommended as a solution for the inequality of provision in children’s palliative care.
This qualitative study explored health professionals’ perceptions of the development of a children’s palliative care managed clinical network in England. The study identified key features that aided the development of the managed clinical network, but also identified that these alone were insufficient to overcome barriers that were impeding its development.
Development of a managed clinical network for children’s palliative care – a qualitative evaluation – Andrew Papworth, Lorna Fraser, Jo Taylor. BMC Palliative Care, 22 January 2021.
To download the full paper, click below:-
Lorna is delighted to announce that she has been appointed to the editorial board of Palliative Medicine. https://journals.sagepub.com/home/pmj
Palliative Medicine is a highly ranked, peer reviewed scholarly journal dedicated to improving knowledge and clinical practice in the palliative care of patients with far advanced disease.
Lorna is looking forward to being able to work with the other board member of Palliative Medicine to continue to champion the publication of high quality research in children’s palliative care.
Lorna and Jo had been looking forward to attending the European Association of Palliative Care Research Congress in Palermo in May 2020 but due to the ongoing COVID-19 pandemic this was changed to an online conference in October 2020.
Jo gave an invited talk at the EAPC Paediatric Taskforce session where she presented findings from the online Parent SHARE survey which investigated the experiences, information and support needs and decision-making for children and young people with a life-limiting condition in response to the Coronavirus pandemic.
Lorna Chaired a session alongside Prof Bluebond Langer about service delivery in children’s palliative care and also presented the findings from Make Every Child Count Study.
Jo presented a poster with some early findings of the number of children with life limiting conditions who are taking multiple medications. Please click on the title below to see the poster:-
Lorna said “This was my first online congress, it went well and also enabled me to still collect my daughter from school and multitask as I could join sessions whilst cycling on my turbo trainer. I am part of the scientific committee for EAPC 2021 which will also be online so we have a hard act to follow.
This mixed methods systematic review examined the impact of specialist paediatric palliative care for children and young people with cancer and explored the factors affecting access.
Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review - Johanna Taylor, Alison Booth, Bryony Beresford, Bob Philips, Kath Wright, Lorna Fraser. Palliative Medicine, 2 May 2020
To download the full paper click on the link below:-
A new study shows that the number of children in England with life-limiting or life-threatening conditions has continued to rise over the last 17 years.
The research is published amid the Coronavirus crisis in the UK, which has already had a far reaching and negative impact on families caring for seriously ill children.
The Make Every Child Count study, conducted by the University of York, has revealed that the number of children in England with life-limiting or life-threatening conditions increased to 86,625 in 2017/2018 compared to 32,975 in 2001/2002.
The research is published amid the Coronavirus crisis in the UK, which has already had a far reaching and negative impact on families caring for seriously ill children, who are feeling frightened, isolated and alone, with some families struggling to get the right care and support for their child.
Responding to predications that the number of children with life-limiting conditions will rise at least another 11% by 2030, UK children’s palliative care charity, Together for Short Lives is calling on the Government, NHS and others to make sure seriously ill children and their families can access the lifeline services they rely on.
The new research also reveals that prevalence of life-limiting conditions is by far the greatest in babies under the age of one, and that more young people with life-limiting conditions are living to the age of 19 years.
The reports says that more seriously ill children are living longer is cause for celebration, however there is an urgent need to make sure that children’s palliative care services are properly planned, funded and delivered to ensure that these children, and their families, can live life to the full. It’s hoped that the Make Every Child Count research will make it easier for government, the NHS, children’s palliative care providers and others to do this.
The study used routinely collected hospital and death certificate data in England to provide an up-to-date count of children and young people with life-limiting and life-threatening conditions.
Other key findings also show:
Lead author, Professor Lorna Fraser, Director of the Martin House Research Centre at the University of York said: “Hopefully these findings will help commissioners and service providers to work together to ensure that all these children and young people have access to accessible and age appropriate health services.”
CEO of Together for Short Lives, Andy Fletcher said: “In many ways the pandemic has exacerbated many of the challenges families were already facing in getting the support and services they need. So, we must not forget the growing number of children and young people with life-limiting and life-threatening conditions and their families who need care and support, both now and in the future.”
The research was conducted by the Martin House Research Centre, University of York and funded by The True Colours Trust.
The full report, Make Every Child Count can be read by clicking on the link below:-
To watch the webinar with Professor Lorna Fraser discussing her findings from the Make Every Child Count Study please click on the link below:-
On Wednesday 8 January 2020, hundreds of staff, students and members of the public joined at the University of York for a day of inspirational short talks about the world-leading research happening here in York Our very own, Dr Lorna Fraser gave a talk entitled 'Caring about the evidence: changing the face of palliative care for children in the UK'. These were recorded and below is a link to all the talks (scroll down to the very last one for Dr Fraser's):-
Two Martin House Research Centre members presented a paper on our staff wellbeing in children’s hospices (SWiCH) project at the 2019 Hospice UK 2019 National Conference in Liverpool.
Dr Andrew Papworth and Dr Jo Taylor presented preliminary findings from a systematic literature review and outlined their ongoing work to develop and validate a new measure of staff wellbeing.
The result of this work (the first phase of the SWiCH project) will be used to inform the development of a national survey of all UK children’s hospice organisations and their care staff.
The project aims to increase understanding about the work-related stressors and rewards experienced by children’s hospice care staff, and to identify the staff support systems and organisational practices that offer the most potential to enhance wellbeing at work.
The conference abstract has been published in BMJ Supportive & Palliative Care: https://spcare.bmj.com/content/9/Suppl_4/A7.2
We had our first meeting of the EAPC Scientific Committee for their World Congress on Palliative Care in Helsinki May 2021 (https://www.eapc-2021.org/general-information/). It was a privilege to work with the 12 great minds around the table to plan the plenary speakers. There were so many great suggestions but down to great chairing by Prof Fliss Murtagh, we were able to reach consensus very quickly. I am sworn to secrecy but watch this space, this will be a fantastic line-up.
I was really impressed by the commitment of the EAPC to continue to grow the paediatric palliative care program after the success of the 2019 Berlin Congress. The call for parallel sessions is now open https://www.eapc-2021.org/scientific-information/proposal-parallel-sessions/ and the free papers abstract will be open next spring.
Hope to see lots of you in Helsinki.
Dr Lorna Fraser - Director
I was honoured to be asked to speak the National Conference for Children’s Palliative Care in the Czech Republic about the importance of research and the Martin House Research Centre. I was also given the opportunity to visit with Jitka Kosikova, Cesta Domu a newly built hospice in Prague which hopes to be able to care for children and adults.
More than 200 delegates attended the conference, and given that the Czech Republic is only a sixth of the population of the UK this showed the commitment of their staff and healthcare system to developing a programme of paediatric palliative care. My understanding of the Czech language is limited but there was a real willingness to work together for the aim of providing the best possible care for the children.
I was delighted to be the first invited speaker to the seminar series at the purpose built Kinderpalliative care centre in Munich by Prof Monika Fuhrer. This was an opportunity both to present some of our research to the large team of clinical and research specialists in the children’s palliative care team and the medical staff at the children’s hospital in Munich.
The first challenge to me was to try to compress all the fantastic work from the MHRC team into two presentations as we have so many interesting studies.
The children’s palliative care team were very interested to hear our patient and public involvement with our Family Advisory Board and Young people panel. This type of interaction is unusual in Germany so it was great to be able to share the value of this part of our work and give some examples of how this has helped us be successful in grant applications and ensure that they were undertaking our research in an appropriate way.
It was good to hear about their current research studies in advance care planning and perinatal palliative care and hopefully some collaborative studies will develop.
Director of the Martin House Research Centre
We are seeking a researcher or clinical academic to join us as a member of the Martin House Research Centre management team
The (MHRC) is a partnership between Martin House Children’s Hospice and the University of York (Department of Health Sciences and the Social Policy Research Unit). It is a multi-disciplinary centre for research on the care and support of children and young people with life limiting conditions or medical complexity, their families and the workforce that care for them. The Centre is holistic in its scope, recognising that the care and support needs of children and families span clinical/medical, social, psychological, parenting/caring, spiritual, financial and practical domains.
Launched just over two years ago, the Centre has been very successful in developing a broad portfolio of applied research and securing significant external funding.
Due to the imminent retirement of a founding member of the MHRC management team, Dr Roger Parslow, we are asking for expressions of interest from Yorkshire and Humber based researchers or clinical academics to join the Centre’s management team.
The management team consists of , and Dr Jan Aldridge (Martin House).
Skills and Experience
As a member of the Centre’s Management Team, contribute to the operational and strategic management of the Centre, attending meetings approximately every 6-8 weeks as well as one-off events (in person or virtually).
There is a 5% FTE of associate professor salary available if needed and travel expenses can be reimbursed. Applicants should provide a CV and covering letter stating why they would like to be considered for this position. These should be emailed to Prof Trevor Sheldon (email@example.com) and Prof Patricia McKinney (firstname.lastname@example.org) by the 1st April.
This is an exciting opportunity for a highly motivated research trainee to contribute to the multi-
disciplinary team in the Martin House Research Centre (www.york.ac.uk/mhrc) and work towards a PhD.
You will contribute to a mixed methods study which aims to assess the health of mothers of children with
life-limiting conditions whilst developing your own PhD study exploring the health and wellbeing of
fathers. You will take responsibility for co-ordinating and undertaking activities for this project, which
includes qualitative interviews or focus groups, and literature reviewing. You will have the opportunity
to undertake a bespoke training programme of internal and external methodology and professional
development courses whilst working towards your PhD. You will also have an opportunity to contribute to the wider portfolio of research being undertaken by the Martin House Research Centre team.
Further information found here
Martin House Research Centre researchers have reviewed the existing literature identifying research priorities related to the care of children and young people with life-limiting conditions, their parents, and all those who care for them. Published in the international journal Palliative Medicine, this systematic scoping review identified 24 research prioritisation exercises and 279 research questions or priority areas for health research. The priorities were mapped in the context in which they were agreed, resulting in the identification of 16 common topic areas, 55 sub-topics and 12 sub-sub-topics. The themes ranged from service delivery to treatments and interventions to communications to emotional and psychological issues. The map provides the opportunity for a coherent approach to improving the evidence base for this area of practice. More broadly this scoping review highlights the need for the perspectives of children and young people and their families to be included when undertaking research prioritisation exercises.
Martin House Research Centre researchers have published a paper in the journal Developmental Medicine & Child Neurology, exploring the association between missed outpatient appointments and unplanned hospital care for children with neurological conditions. The research showed that those who missed outpatients appointments had 19 percent more emergency inpatient admissions and 16 percent more visits per year than those who missed none. 'Did not attends' had a larger increase in unplanned health care than patient or provider cancellations. If no appointments were missed, the models predict there would have been 107 000 fewer A&E visits from 2007/2008 to 2014/2015 and 104 000 fewer emergency inpatient admissions from 2003/2004 to 2014/2015. Improving outpatient attendance may have the potential to reduce emergency inpatient admissions and A&E visits.
We are delighted to announce that two members of the Martin House Research Centre Team have been awarded prestigious NIHR fellowships in the 2017/18 round of awards.
Stuart Jarvis will be undertaking a doctoral research fellowship entitled ‘Transitioning from paediatric to adult healthcare with a life limiting condition; does this lead to increased healthcare usage, cost and worse patient outcomes?’
Centre Director Lorna Fraser, will be completing a Career Development Fellowship ‘Crisis Prevention rather than Crisis Management; the Health of Mothers of Children with a Life-Limiting condition’
Both programmes of work will start in January 2019 and details will appear on our project pages.
Any questions about either fellowship please contact email@example.com
Martin House Research Centre will be well represented in Rome this October at the Maruzza Congress on Pediatric Palliative Care. Despite the centre being in only its second year, seven researchers will be presenting new and innovative work on an international stage:
This will be a great opportunity to develop dialogues with a number of leading academics, health professionals and other stakeholders, and generate a wide-reaching, collaborative interest in the centre’s research.
Dr Lorna Fraser, Director of the Martin House Research Centre, is leading a new research study called “Make Every Child Count” which will give an up-to-date estimate of the number of babies, children and young people with life-limiting and life-threatening conditions across the UK and will help to predict levels of need in the future. Together for Short Lives has secured funding for this research from the True Colours Trust following a consultation with the children’s palliative care sector which identified this as a pressing need.
More information can be found on the
Our Director, Lorna Fraser was delighted to receive the European Association for Palliative Care Postdoctoral research award last week at the EAPC conference in Bern. This was a great opportunity for Lorna to speak about children’s palliative care on the plenary stage to more than 1000 EAPC delegates. Lorna was also interviewed for the EAPC blog which can be accessed here
Martin House Research Centre researchers have published a paper in the International Journal of Population Data Science looking at hospital use among children and young people with neurological conditions. The research showed that 8.8% of hospital bed days for 0-19 year olds in England in 2014/15 were for those with neurological conditions, an increase of a third from 6.6% in 2003/04. Reductions in length of stay and bed days per person per year were more than offset by increasing numbers of children and young people having neurological diagnoses. Length of stay and bed days varied by diagnostic group, age, deprivation category and region and these variations should be taken into account in resource planning for this growing hospital population.
Our Director, Lorna Fraser, travelled to Buenos Aires last month to present the plenary lecture at the 1st Argentinian Paediatric Palliative Care Conference which was part of the National Argentinian Paediatric Society Conference.
Lorna also had the opportunity to visit the Paediatric Palliative Care team at the Hospital Posadas in Buenos Aires, present to the paediatricians and discuss their model of providing palliative care.
Lorna said: “It was a great honour to present the plenary lecture and meet the leaders of paediatric palliative care in Argentina, we had preliminary discussions about working together on some research studies in the future so hopefully this is the start of an ongoing collaboration”.
The Remit of the Martin House Research Centre is to conduct research on the care and support of children and young people with life-limiting conditions or medical complexity, their families and the health and care workforce.
Come along to learn more about the Martin House Research Centre and tell us how families should be involved in the research we do.
During the event, we would like to tell you about some of our ongoing projects and to ask for your views and ideas about two areas of research we are considering for the Centre. The first is about possible new ways to detect, or assess, pain in children who do not use speech to communicate. The second is about how we might better support parents who deliver complex care to their child at home.
Contact: Jo Taylor
This is an exciting opportunity for a highly motivated research fellow with experience in quantitative data analyses and handling large data sets to contribute to the multi-disciplinary team in the Martin House Research Centre.
You will conduct research and contribute to the portfolio of secondary data analyses being undertaken by the Martin House Research Centre team and take responsibility for co-ordinating and undertaking activities including developing research questions, handling large complex data sets including data analyses plans, data cleaning, analyses and report writing.
Martin House Research Centre researchers have published the findings of a study exploring the rewards and challenges of working in a children’s hospice by analysing information obtained from interviews and focus groups with care team staff. The paper published in the journal BMC Palliative Care, reports that ‘getting it right’ for children and their families is both rewarding and challenging, and a motivator for staff. Delivering holistic care was also rewarding but at the same time placed individuals at the limits of their own competency when they delivered aspects of care that were unfamiliar or they lacked confidence about. Participants described how team dynamics, organisational factors and individual resilience could also affect their wellbeing at work. The study found that structured opportunities to reflect on and learn from work as a team were highly valued, particularly as support outside of work was limited.
A report on therapy interventions for children with neurodisabilities has just been published. This research was led and carried out by some of the Martin House Research Centre’s research team. The project investigated the ways physiotherapy, occupational therapy and speech and language therapy are currently being organised and delivered, and parents’ and professionals’ views about how therapy interventions help and support children, should be evaluated and research priorities. The project was commissioned by the National Institute for Health Research. It will used by them to inform decision-making about the sorts of research they should fund on therapies for children with neurodisabilities.
Download a summary of the report for parents here: THINC Project (PDF , 634kb)
Following the launch of the Martin House Research Centre at the beginning of 2017, we are very pleased to announce the first in its series of bi-annual conferences.
This is a conference for researchers and users of research evidence. It will bring together the research community and service/strategic leads who to use research evidence to inform the design, delivery and evaluation of services for children and young people with life-limiting conditions and their families.
The conference aims are:
Date: Friday, 21 September 2018
Venue: University of York, York, UK
Conference registration and a call for abstracts (oral and poster presentations) will open in the new year. A draft programme will be also be made available then.
We were delighted to welcome to our event over 40 participants prepared to contribute their perspective to identifying research priority topics for the Martin House Research Centre (MHRC). Young people from Martin House Hospice, parents of children with life limiting conditions, paediatric doctors specialising in neonatology, neurology, oncology and palliative care, specialist hospice and community nurses, members of Martin House’ care and bereavement teams, strategic leads of children’s palliative care services, a clinical psychologist, , chaplains, representatives of major national bodies such as Together for Short Lives and the National Paediatric Palliative Care Clinical Network, and senior researchers in the field from across the UK, shared their thoughts and ideas.
It was an intensive day for everyone as participants were divided into groups and asked to agree the order of priorities for research. This generated some lively debates and discussions, and the shared common purpose of ultimately helping to improve the care of infants, children and young people with life limiting conditions, created an overwhelmingly positive atmosphere.
Everyone got a chance to add their own ‘burning questions’, and to identify issues not identified in previous research prioritisation exercises which the MHRC had identified and reviewed prior to the consultation event.
A wide range of issues were discussed from legislation to emotional well-being, end-of-life care to measuring quality of life, and service models to communication and decision-making. The research priorities agreed by each of the groups are being collated and together with advice from the MHRC Advisory Board, will help map the future work of the Centre.
Martin House Research Centre researchers have published a paper comparing ways of measuring the number of children and young people with life limiting conditions. The paper, published in the journal Palliative Medicine, reports that use of death records underestimates the prevalence of life limiting conditions by up to 31% compared to using hospital records. The authors recommend that planning of resources for children and young people with life limiting conditions should be based on estimates of prevalence from hospital records.
This has been a very exciting and busy few months for the team. See our for more details.
The University of York and Martin House Children’s Hospice has launched a revolutionary new multi-disciplinary centre committed to leading research on the management, care and support of children with life-limiting conditions and their families. . See also, article in ehospice.