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Previous Publications

2019

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 link below:-

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


  • Paper published 9 Oct 2019 entitled ‘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 link below:-

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


  • Paper published 16 Dec 2019 entitled 'Letter in reply:  Anxiety and Depression Prevalence Among Children, Adolescents and Young Adults with Life-Limiting Conditions - Reply' - Barker, M.M., Bland, J.M. & Fraser, L.K. JAMA Pediatrics

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

Anxiety and Depression Prevalence in Children, Adolescents, and Young Adults With Life-Limiting Conditions—Reply


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

Children and young people with life-limiting conditions experience many challenges in their day-to-day life which may make them more vulnerable to anxiety and depression. However, the levels of anxiety and depression across this group is unknown. This paper examined 37 published studies which had assessed anxiety and depression among children and young people with life-limiting conditions, finding that anxiety and depression were experienced more commonly in this group than among healthy children and young people. Although this suggests that more mental health support needs to be available for these children, most of the studies only included a small number of children, and the range of life-limiting conditions studied was very narrow. Therefore, further research is needed that assesses the levels of anxiety and depression seen across the whole range of life-limiting conditions.

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

Prevalence and Incidence of Anxiety and Depression Among Children, Adolescents, and Young Adults With Life-Limiting Conditions


  • Paper published 19 March 2019 entitled 'The impact of New Labour's English health inequalities strategy on geographical inequalities in infant mortality: a time trend analysis' - Robinson, T., Brown, H., Norman, P., Fraser, L.k., Barr, B. & Bambra, C.L. Journal of Epidemiology & Community Health

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

The impact of New Labour's English health inequalities strategy on geographical inequalities in infant mortality: a time trend analysis

2018

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 link 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 link below:-

Therapy interventions for children with neurodisabilities: a qualitative scoping study


  • Paper published Nov 2018 entitled 'Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents, and all those who care for them: a systematic scoping review' - Booth AM, Maddison JR, Wright K, Fraser LK, Beresford BA.  Palliative Medicine. 2018 Nov 8;32(10):1552-1566.

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

https://doi.org/10.1177/0269216318800172(MHRC)


  • Paper published 21 Nov 2018 entitled 'Documentation of breakthrough pain in narrative clincial records of children with life-limiting conditions: feasibility of a retrospective review' - Oostendorp, L., Rajapakse, D., Kelly, P., Crocker, J., Dinsdale, A., Fraser, L.K. & Bluebond-Langner, M.  Journal of Child Health Care

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

Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: Feasibility of a retrospective review


  • Paper published 29 Oct 2018 entitled 'Outpatient appointment non-attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study' - Jarvis, S.W., Livingston, J., Childs, A-M. & Fraser, L.K. Developmental Medicine and Child Neurology

This research aimed to test whether children and young people with neurological conditions who miss outpatient appointments have more emergency inpatient admissions and Accident and Emergency centre (A&E) visits than those who attend. Routine hospital records from 2003 - 2015 were used to identify individuals with neurological conditions and assess their outpatient attendance and numbers of emergency inpatient admissions and A&E visits. Of over 500 000 individuals studied, those who missed outpatient appointments had 19% per cent more emergency inpatient admissions and 16% more A&E visits per year than those who missed none. Children who were not brought to appointments, without the appointment being cancelled in advance, had a larger increase in unplanned health care than those for whom appointments were cancelled in advance. If no appointments were missed, the research suggests there could have been 107 000 fewer A&E visits from 2007 to 2015 and 104 000 fewer emergency inpatient admissions from 2003 to 2015. Improving outpatient attendance may have the potential to reduce emergency inpatient admissions and A&E visits in this group.

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

Outpatient appointment non‐attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study


  • Paper published March 2018 entitled 'An urgent call for collaboration: the future of research in paediatric pallative care' - Lorna K Fraser.  European Journal of Pallative Care 25(2):56-58 

Abstract:-

Although the child mortality rate in Europe is the lowest in the world, around 53,000 children aged 0–14 years died in Europe in 2016.¹ A large proportion of these children would have had a life-limiting or life-threatening condition and, therefore, may have benefited from the input of paediatric palliative care services. Paediatric palliative care, however, is not built upon the culture of research that its adult counterpart is.

2017

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 link below:-

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

Pre 2017

 

  • 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