Article: Practical aspects of performing Glasgow Coma Scale observations

In 2014 the Glasgow Coma Scale, the tool that was developed to identify and chart deterioration in a patient's level of consciousness marked it's 40th anniversary and further guidance was produced to assist healthcare staff with performing the assessment.  this article discusses essential  aspects to the new guidance to help staff optimise use of the scale and their interpretation.

Waterhouse, C. 2017.  Practical aspects of performing Glasgow Coma Scale observations.  Nursing Standard, 31 (35) p 40 - 46

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Article: Update on symptom control - nausea and vomiting

Nausea and vomiting are common in people with life-limiting diseases and those nearing the end of life.  This article examines the mechanisms that lead to these symptoms and reviews the evidence for the efficacy of various classes of drugs in alleviating them.  Written from an adult palliative care perspective,

Ubogagu, E. 2017. Update on symptom control - nausea and vomiting, European Journal of Palliative Care,  24 (1) p 28 - 32,

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Article: Pulse oximetry: what the nurse needs to know

This article discusses the clinical importance of taking pulse oximetry, the correct procedure involved, the rationale and levels of peripheral oxygen saturation at which supplementary oxygen is administered.

Myatt, R. 2017.  Pulse oximetry: what the nurse needs to know.  Nursing Standard, 31 (31) p 42-45.

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Article: Affording opportunities to discuss deterioration in paediatric pallaitive care consultations: a conversation analytic study

This Australian study explores how discussions about deterioration are managed, identifying 2 communication practices used that afforded opportunities to discuss deterioration.

Ekberg, S., Danby, S., Herbert, A., Bradford, N. & Yates, P. 2017. Affording opportunities to discuss deterioration in paediatric palliative care consultations: a conversation analytic study.  BMJ Palliative and Supportive Care Online January 19 2017

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Article: A walk through bereavement theory

This article examines and discusses specific grief theories that have emerged over the last 50 years, offering a number of possible ways why people react as they do to the death of someone close to the and provides an overview of some of the theories linked with bereavement work.

Dosser, I. 2016.  A walk through bereavement theory.  End of Life Care Journal, November 10 2016.

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Article: Educational impact of paediatric palliative stimulation study days

The aim of this study was to establish if attendance at a simulation study day improved confidence and knowledge in the management of common and/or difficult situations in palliative care. Working with local paediatric hospices or specialties to palliative care, attendees were nursing staff working in the community or in hospices.  The results demonstrated a significant improvement in confidence following the course and provided a valuable opportunity to network and share/discuss experiences.

Renton, K,. Quinton, H. & Anton-Paul, T.M. 2017.  Educational impact of paediatric palliative stimulation study days.  BMJ: Supportive & Palliative Care Online June 17 2016

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You Tube Videos: Postural Care

Produced by PAMIS, the Scottish charity supporting children, young people and adults with profound and multiple disabilities.  This DVD, aimed primarily at families and carers, covers what is posture, postural care, and the equipment available.  34 minutes in length.  

Available at https://www.youtube.com/watch?v=_YC8U9YR92k

Guidelines: End of life care for infants, children and young people with life-limiting conditions: summary of NICE Guidance

This article summarises the recent guidance from the National Institute for Health and Clinical Excellence (NICE) on the planning and management of end of life care in infants, children and young people.  It also includes a visual summary in the form of an infographic.

Villanueva, G., Murphy, M, S., Vickers, D., Harrop, E. & Dworzynksi, K. 2017.  End of life care for infants, children and young people with life-limiting conditions: summary of  NICE Guidance. BMJ Online December 8, 2016

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Report: The state of the UK children's hospice workforce: a report on the demand and supply of nurses to children's hospices

This report sets out what Together for Short Lives found when they carried out a snapshot survey of nurse vacancies at UK children’s hospice organisations in December 2016. They found that:
• the children’s hospice nurse vacancy rate has grown since 2015
• it is getting harder to recruit nurses to posts with increasing shortages of more experienced nurses
• the nursing shortfall means that children’s hospices are being increasingly forced to cut back the vital palliative care they can offer to families.

Together for Short Lives, 2017.  The state of the UK children's hospice workforce.  Together for Short Lives.

Click here to access report

Article: Prioritisation of future research topics in paediatric palliative care in Ireland

In children's palliative care, there is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex needs, resulting in care being provided by a range of voluntary and statutory agencies.  As a new and highly specialised field, there is a need to develop an evidence-based approach to providing children's palliative care.

Quinn, C., McCarthy, S., Devins, M. et al. 2017.  Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study.   International Journal of Palliative Nursing, 23 (2) P 88 - 97.

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Article: Paediatric palliative nursing: the tensions between closeness and professional distance

Caring for children who are dying puts special demands on health care staff.  This article looks at how nurses working in children's palliative care deal with the tensions of supporting children and families at end of life while being aware of the need for professional distance in certain situations.

Buder, R. & Fringer, A. 2016. Paediatric palliative nursing: the tensions between closeness and professional distance.  European Journal of Palliative Care, 23 (6) p 278 - 280.

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Article: Life transitions of adolescents and young adults with life-limiting conditions

A systematic review was carried out, which identified 18 studies as relevant to this study.   Two major life transitions were identified: "illness transition" and "developmental transition" Sub-themes within the transitions were also identified, namely the impact on family members, and the physical, mental and emotional health needs requiring them to make adaptations. The authors concluded further research is needed to bring further insight, in particular the impact on the whole family.

Johnston, B, Jindal-Snape, D. & Pringle, J. 2017.   Life transitions of adolescents and young adults with life-limiting conditions.  International Journal of Palliative Nursing, 22 (12) p 608 - 616.

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Article: "The nice thing about doctors is that you can sometimes get a day off school": an action research study to bring lived experiences from children, parents and hospice staff into medical students' preparation to practice

Medical students have lower confidence in paediatric palliative care than other specialties with limited specific teaching.  In this study, 7 children, 5 parents and 6 staff were recruited from a children's hospice.  Participants discussed what newly qualified doctors needed to care for children with life-limiting conditions.  6 learning themes emerged including treating children as individuals, acting as a person before being a doctor, learning from children, parents and staff, and working as part of the team.  From these themes a guide was produced aimed at medical students.  Guide available on request from the library

Spalding, J.& Yardley, S. 2016.  "The nice thing about doctors is that you can sometimes get a day off school": an action research study to bring lived experiences from children, parents and hospice staff into medical students' preparation to practice.   BMJ Supportive and Palliative Care, 6 (4) p 459 - 464.

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Booklet: What would children, parents and hospice staff like to teach medical students about paediatric palliative care?

This guide is intended to help undergraduate medical students and others learn about paediatric palliative care from the perspective of children, parents and hospice staff.  It comes from workshops carried out at Donna Louise Hospice.  The workshops have been published as a paper "The nice things about doctors is that you can sometimes get the day off school".  See post above.

Spalding, J. & Yardley S. What would children, parents and hospice staff like to teach medical students about paediatric palliative care?   Good, bad and ugly perceptions.

Booklet available from the EACH Library

Article: Parents' experiences of living with, and caring for children, adolescents, and young people with Mucopolysaccharidosis (MPS)

Eight parents took part in this Irish study, with a range of MPS disorders, aged from 6 months to 22 years, with parents interviewed at 3 points over a 17 month period. The main themes identified  were described as living with MPS, the stigma of a rare condition, MPS as encompassing multiple diseases, an unknown future, hospital vs. home, the experience of waiting, a tough road ahead and things in their day to day life with MPS. Also included was the impact on their other children, the impact of their own physical and psychological well-being, and the stigma and isolation of living with a child with a rare disorder.   The study highlighted the impact that a disease that is chronic, progressive and degenerative can have on all dimensions of a family's life.

Somanadhan, S. & Larkin, P. J. 2016.  Article: Parents' experiences of living with, and caring for children, adolescents, and young people with Mucopolysaccharidosis (MPS).  Orphanet Journal of Rare Diseases, 11 (1) P 138 -

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