Accessibility statement

Publications

2020 

  • Paper Published in May 2020, 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:-

https://journals.sagepub.com/doi/10.1177/0269216320908490 

  • Paper on GPs’ role in caring for children and young people with life-limiting conditions. Regular contact with the same GP associated with reduced emergency hospital care:-

Martin House Research Centre researchers have had a paper accepted on importance of the role that GPs play in the care of children and young people with life limiting conditions. To be published in the British Journal of General Practice, the paper shows that those individuals who saw a GP more regularly had fewer emergency inpatient admissions and A&E attendances. Those individuals who saw the same GP for more than two thirds of visits had fewer A&E attendances. The study therefore highlights the potential importance of regular contact with the same GP for CYP with LLCs and their families, alongside care provided by specialist paediatricians.

GPs’ role in caring for children and young people with life-limiting conditions: a retrospective cohort study - Stuart JarvisRoger C ParslowCatherine HewittSarah Mitchell and Lorna K Fraser.  

2019

  • Paper on the effectiveness of bereavement support interventions for parents of infants and children who die: a systematic review

This study summarised all the published studies that have aimed to evaluate the effectiveness of bereavement support interventions for parents whose child had died. Only eight studies have been published since 1980 which have aimed to assess the effectiveness of bereavement support interventions for parents. Most of these were from the US and focussed on deaths around the time of birth or the first month of life.   These studies all evaluated different interventions using different and often lots of, outcome measures. Despite measuring lots of different outcomes only 3 studies showed any positive benefit. We had concerns over the quality of reporting and methods of these studies which means that we cannot draw clear conclusions. Future research should clearly identify the important outcomes for parents and use appropriate research methods.

To download the full paper, click on the title below:-

The effectiveness of bereavement support interventions for parents of infants and children who die: A systematic review

  • Paper on ‘Your Tube’: the role of different diets in children who are gastrostomy fed: protocol for a mixed methods exploratory sequential study

This paper describes the plans for recruiting children, parents and healthcare professionals into the 'Your Tube' study.  This study aims to address a research gap by assessing the symptom profile (reflux, constipation, pain) quality of life of children who are gastrostomy fed, and safety aspects (e.g. tube blockage) by comparing those who are formula fed and those who are predominantly fed a home-blended diet.  The study will also examine the impact on parents’ quality of life and explore costs to the families and the NHS.  The study is being funded by the National Institute of Health Research Health Technology Assessment (HTA) Programme.  

To download the full paper, click on the title below:-

‘YourTube’ The Role of Different Diets in Children who are Gastrostomy Fed; protocol for a mixed methods exploratory sequential study

  • Paper on 

Barker MM, Beresford BA, Bland JM, Fraser LK. The prevalence and incidence of anxiety and depression among children, adolescents and young adults with life-limiting conditions: a systematic review. JAMA pediatrics. 2019 Jul 8;173(9).

To download the full paper click on the title below:-

https://doi.org/10.1001/jamapediatrics.2019.1712

 

2018

  • Paper on hospital use among children and young people with neurological conditions

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.

To download the full paper, click on the title below:-

The impact of neurological disorders on hospital admissions for children and young people: a routine health data study

  • Report on therapies for children with neurodisabilities

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) 

 

To download the full paper, click on the title below:-

Therapy interventions for children with neurodisabilities: a qualitative scoping study

2017

  • Paper exploring the rewards and challenges of working in a children’s hospice 

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.

To download the full paper, click on the title below:-

Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a mult-disciplinary children's hospice care team

Previous Publications:-

  • Jarvis, SW & Fraser, LK 2017, 'Comparing routine inpatient data and death records as a means of identifying children and young people with life limiting conditions' Palliative Medicine.
  • Fraser, LK & Parslow, R 2017, 'Children with Life-Limiting Conditions in Paediatric Intensive Care Units: a national cohort, data linkage study' Archives of Disease in Childhood, pp. 1-9. DOI: 10.1136/ archdischild- 2017- 312638
  • Fraser, LK, Fleming, S & Parslow, R 2017, 'Changing Place of Death in Children who died after discharge from Paediatric Intensive Care Units: a national, data linkage study' Palliative Medicine, pp. 1-10. DOI: 10.1177/0269216317709711
  • Aldridge J,  Shimmon K, Miller M, Fraser LK, Wright, B "I can't tell my child they are dying".  Helping Parents Have Conversations With Their Child. Archives of Disease in Childhood 2017 March 13
  • Fraser, LK & Norman, P 2016, 'The use of routine data in health research; an example from palliative care'. in SAGE Research Methods Cases.
  • Jarvis, SW, Parslow, RC, Carragher, P, Beresford, BA & Fraser, LK 2016, 'How many Children and Young People with Life Limiting Conditions are clinically unstable?: a National data linkage study'
  • Bogosian, A, Van Vliet, LM, Craig, G, Fraser, LK & Turner-Cobb, JM 2016, 'Minding the gap and moving forward in children's long-term conditions: a vital role for health psychology' vol 21, no. 3., 10.1111/bjhp.12193
  • Woodcock, IR, Fraser, LK, Norman, P, Pysden, K, Manning, S & Childs, A-M 2016, 'The prevalence of neuromuscular disease in the paediatric population in Yorkshire, UK: variation by ethnicity and deprivation status' vol 58, no. 8, pp. 877–883., 10.1111/dmcn.13096
  • Fraser LK, Lidstone V, Miller M, Aldridge J, Norman P, McKinney PA et al. Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset. Palliative Medicine. 2014 Apr 3#.
  • Norman P, Fraser L. Prevalence of life-limiting conditions in children and young people in England: Time trends by area type. Health & place. 2014 Mar;26:171-9.
  • Fraser LK, van Laar M, Miller M, Aldridge J, McKinney PA, Parslow RC, Feltbower RG. Does referral to specialist paediatric palliative care services reduce hospital admissions in oncology patients at the end of life? British Journal of Cancer. 2013, 108(6),1273-79.
  • Fraser LK, Miller M, Aldridge J, Norman P, Hain R, McKinney PA, Parslow RC. Rising National Prevalence of Life Limiting Conditions in Children in England. Pediatrics 2012 129 (4) e923-e929
  • Fraser LK, Aldridge J, Childs AM, Miller M, McKinney PA, Parslow RC. "A cohort study of children and young people with progressive neuromuscular disorders; clinical and demographic profiles and changing patterns of referral for palliative care" Palliative Medicine. 2012 26;924-929
  • Fraser LK, Manning S, Miller M, McCullough R, Aldridge J  Childs AM.Hospice Provision and Usage amongst young people with Neuromuscular Disease in the United Kingdom. European Journal of Paediatric Neurology 2011. 15(4):326-330 Jul 2011
  • Fraser LK, Miller M, McKinney PA, Parslow RC, Feltbower RG. Referral to a Specialist Paediatric Palliative Care Service in Oncology Patients in Yorkshire, UK. Paediatric Blood and Cancer 15 Dec 2010
  • Fraser LK, Fleming T, Miller M, Draper ES, McKinney PA, Parslow RC. Palliative Care Discharge from Paediatric Intensive Care Units in Great Britain. Palliative Medicine 24(6):608-615 Sep 2010
  • Fraser LK, Miller M, Draper ES, McKinney PA, Parslow RC. Place of Death and Palliative Care following discharge from Paediatric Intensive Care Units. Archives of  Disease in Childhood 06 Jul 2010
  • Taylor LK, Miller M, Joffe T, Parslow RC, Aldridge J, Bailey CC, McKinney PA. Palliative care in Yorkshire, UK 1987-2008: survival and mortality in a hospice. Archives of Disease in Childhood 95(2):89-93 Feb 2010