Article: Paediatric inflammatory multisystem syndrome temporarily associated with SARS-CoV-2 (PIMS-TS): the Evelina Experience

An interesting read, describing the experience of the Evelina London Children's Hospital and the 70 children admitted to the hospital with the newly named SARS-CoV-2 (PIMS-TS).

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Article: Paediatric multisystem inflammatory syndrome temporarily associated with SARS- CoV-2 (PIMS-TS): providing resuscitative care

Little is known about severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus responsible for the COVID-19 pandemic.   Children remain a small sample of the confirmed cases of COVID-19 in the UK but the reasons for this are relatively unknown. However a small number have been identified as developing a significant inflammatory response, referred to as paediatric inflammatory multisystem syndrome (PIMS-TS) which involves persistent fever and organ dysfunction.  This article presents a case study to explore the resuscitative care provided to a 10 year old with suspected PIMS-TS.

Kempsall-Smith, M & Meenan, S. 2020. Paediatric multisystem inflammatory syndrome temporarily associated with SARS- CoV-2 (PIMS-TS): providing resuscitative care.  Nursing Children and Young People, 32 (5) p 14 - 17.

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Article: Giving oral medicines and supplements to children

The aim of this article is to review the challenges associated with prescribing oral medications to children, especially those who cannot swallow pills, and to provide practical guidance on solutions.    They conclude by discussing an evidence based method for teaching children the important life skill of how to swallow whole pills.

Dersch-Mills, D. & Kaplan, B.  2020. Giving oral medicines and supplements to children.  BMJ.  Published online 5th October, BMJ 2020;371:m3550

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Bereavement care interventions for children under the age of 18 following the death of a sibling

Twenty three studies were included in this systematic review.  Bereavement care was most often accessed by children ages 6 - 18 whose sibling had died of cancer 6 - 12 months prior. The interventions were typically group sessions or weekend camps, run predominantly unpaid staff from a variety of backgrounds. Grief education was taught through mediated discussions and bereavement centered activities balanced with play and relaxing activities.   The authors concluded the current literature gives an incomplete picture of appropriate childhood bereavement care with many interventions unpublished or published in non-scientific sources.   They recommend a collaboration between medical resources and community services to gain a better understanding.

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Ridley, A. & Frache, S. 2020.  Bereavement care interventions for children under the age of 18 following the death of a sibling: a systematic review.  Palliative Medicine, 34 (10) p 1340 - 1350

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Article: Men's grief following pregnancy loss and neonatal loss

Emotional distress following pregnancy loss and neonatal loss is common, however little is known about men's grief as the majority of literature and subsequent bereavement care guidelines have focused on women. In this Australian systematic review  46 articles were identified. Findings indicate that men's grief experiences are highly varied, and current grief measures may not capture all of the complexities.  In comparison to women, men may face different challenges including expectations to support female partners, and a lack of social recognition for the grief and subsequent needs.

Obst K L., Due C., Oxlad M. & Middleton P  (2020) Men's grief following pregnancy loss and neonatal loss; a systematic review and emerging theoretical model. BMC Pregnancy and Childbirth,  2020

Contact the Library for a copy or  download here

Article: Equipping children's nurses to de-escalate conflict and communicate challenging information

This article considers some of the challenging situations that healthcare staff may encounter when there are tensions and disagreements between the family of a child and the wider professional staff.  The focus is on disagreements about what some might consider futile critical care. The options available to support the healthcare team and therefore avoid litigation are explored, along with identifying situations that might need de-escalation.   A CPD multiple choice quiz is also available on request.

Crawford, D et al. 2020.  Equipping children's nurses to de-escalate conflict and communicate challenging information.   Nursing Children and Young People, 32 (5) p 23 - 31.

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Article: An overview of the central nervous system and principles of neurological assessment

This article aims to provide an overview of the embryology, anatomy and physiology of the central nervous system (CNS), relating this to the principles of neurological assessment and some f the common neurological symptoms seen in infants and children.   A CPD multiple-choice quiz on this article is also available on request

Crawford, D. 2020.  Biological basis of child health 4: an overview of the central nervous system and principles of neurological assessment.   Nursing Children and Young People, 32 (5) p 33 - 41.

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Article: Investigation and management of childhood dystonia

Dystonia is a challenging condition to diagnose and treat.  It is often under recognised in children with cerebral palsy and frequently co-exists with spasticity.  This guide aims to simplify the approach to diagnosis, investigation and treatment. 

Forman, E. et al. 2020.  Fifteen minute consultation: approach to investigation, and management of childhood dystonia.  Archives of Diseases in Childhood: Education and Practice. epub 19 October 2020.

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Article: Rare health conditions: Krabbe disease and Batten disease

From the British Journal of  Healthcare Assistants a good overview of these two conditions, signs and symptoms, long term prognosis and treatment and management options.  

Barber, C. 2020.  Rare health conditions 39: Krabbe disease; chronic atypical neutrophilic dermatosis with lipodystrophy and elevated temperature syndrome (CANDLE) and Batten disease.   British Journal of Healthcare Assistants, 14 (9) p 423 - 427.

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Article: What will the "new normal" look like for children's services

While severe cases of COVID-19 in children have been rare, with just 70 intensive care admissions  by mid June, children's services have been hard hit.  This article looks at what strategies adopted to cope with the pandemic are likely to stay.

Evans, N. 2020.  What will the "new normal" look like for children's services.  Nursing Children and Young People, 32 (5) p 8 - 11.

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Report: Give me a break

Seriously ill children need short breaks which can meet their often complex physical, emotional, social and spiritual needs.  This new report demonstrates short break care for seriously ill children reduces the risks of parents experiencing poor physical and mental health.  This reduces their demand for NHS services and the number of sick days they need to take off work.  

Julia House & Together For Short Lives, October 2020.   Give me a break: how the UK Government can improve parental health and  reduce health inequalities by allocating short break funding for seriously ill children in England at the Comprehensive Spending Review. 27 pages.

Download here

Report: The economic benefits of short breaks for families of children with life-limiting and life-threatening conditions

The parents of children in need of palliative care are often the primary carers: facing psychological, physical and social distress due the responsibilities of their roles.  One of the ways to support carers in this role is to provide short break care.  Together for Short Lives asked Pro Bono Economics to estimate the potential taxpayer benefit if all parents providing palliative care to their children were able to access short break care. 

Probono Economics. August 2020.  The economic benefits of short breaks for families of children with life-limiting and life-threatening conditions. Together for Short Lives, and Julie House Children's Hospice.  26 pages.  

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Hospice UK: Schwartz rounds

Much of the guidance on best practice in supporting staff in hospices refer to Schwartz Rounds.   They provide a way for all staff across an organisation to come together to share their experiences related to working in a hospice and some of the emotions as a result of this.  They are not therapy groups or solution focused, and all contributions are valued.  This piece from e-Hospice describes one hospices experiences of running a Schwartz groups virtually.

Read more here

Recommended book chapter from the newly published Neonatal Palliative Care for Nurses

Earlier this year, the first book specifically on Neonatal Palliative Care for Nurses was published. Covering a range of topics,  it brings together those working within perinatal, neonatal and children's palliative care, with identified key learning points for each chapter.    Recommended chapters include: 

• Support for Staff: Building Resilience in Nurses
• Collaboration between Hospices and Neonatal Units - Offering Choices
• Legal Issues in Neonatal Palliative Care
• Advance Care Planning
• Organ and Tissues Donation
• Continuing Emotional and Practical Support for the Whole Family
• Fundamental Principles of Effective Symptom Control
• Interdisciplinary Working in Neonatal Palliative Care
• Developing Knowledge and Competence in Neonatal Palliative Care Practice
• Care After Death: For the Baby and their Family

Book: Mancini, A., Price, J. & Kerr-Elliott, T. 2020.  Neonatal Palliative Care for Nurses.  Springer. 

With copyright restrictions, only one chapter can be supplied.  Request here

Article: Anticipatory prescribing in community end of life care in the UK and Ireland during the COVID-19 pandemic: an online survey

This is an update to a survey carried out amongst adult hospices, following changes to prescribing guidelines and practice reported during the COVID-10 pandemic.  An online survey was distributed to members of the Association for Palliative Medicine of Great Britain and Ireland.  261 replied were received in April 2020 from clinicians in community, hospice and hospital settings.  A number of changes were noted including route of administration; drugs prescribed; total quantities prescribed; and doses and ranges.  Recommendations for regulatory changes to permit drug repurposing and easier community access were made.

Antunes, B. et al. 2020.  Anticipatory prescribing in community end of life care in the UK and Ireland during the COVID-19 pandemic: an online survey.  BMJ Supportive & Palliative Care, 10 (3) p 343-349.

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Article: The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic

This Australian study looked at the conversations that took place between families and healthcare professionals during the COVID-19 pandemic. Twenty five paediatric palliative care consultations (including face-to-face, outpatient, tele-health and outpatient and inpatient consultations were videoed. Participants included 14 healthcare professionals, 15 children, 23 adult family members and 5 siblings.  Analysis of conversations revealed the topic was all consuming, both serious and non serious talk, with 55% of the topic initiated by healthcare staff, and 45% by parents.  The authors concluded healthcare staff should not be surprised by the pervasiveness of COVID-19 and many families will have additional needs and concerns that may impact on health and wellbeing.  

Ekberg, K. et al. 2020.  The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: a conversation analytic study.  Palliative Medicine, 34 (9), p 1202 - 1219.

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Article: Symptomatic palliative care for children with neurodisability

Paediatric palliative care and neurodisability are two relatively new, evolving paediatric sub-specialties.  This UK article explores the unique interface through the three domains of complex symptom management, advanced care planning and end of life care.  It describe the practicalities involved in all three areas and highlight the importance of early referral and the process of "dual" or "parallel" planning.   It covers the specific management of the symptoms dystonia/abnormalities of muscle tone, seizures, pain, agitation, secretions, respiratory failure, and gut failure.

Bendle L & Laddie J (2019) Symptomatic palliative care for children with neurodisability.  Paediatrics and child health: 29:10 p 431 - 435

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Report: Parents Matter: the impact on parents mental health when a child has a life-threatening illness

Parents who have a child with a life-limiting illness can experience extreme stress and anxiety, often for many months or years.  This report sets out the particular challenges that they face at different points at a time of life that can be isolating and traumatic.

Rainbow Trust, 2020. Parents Matter: the impact on parents mental health when a child has a life-threatening illness

View summary or full report here

Report: Narrative accounts of parenthood following the death of a child to muscular dystrophy

Five parents were interviewed in this study, describing in depth their experiences from diagnosis to the death of their child.  The study found the diagnosis had significant implications for parental identity along with the loss of particular dreams for their child's future.   They valued the opportunity to retell their 'story" and although painful at times, considered it therapeutic.   A number of new findings were reported in the study.

Summary of findings here

Duchenne Muscular Dystrophy: clinical update

A very good overview of Duchenne Muscular Dystrophy (DMD), from when to suspect DMD, early warning signs, diagnosis and genetic considerations.  It discusses successful management including primary care, multidisciplinary teams, emerging treatments, DMD in adulthood, key complications, and medical emergencies.  The article had a patient co-author.

Fox, H. et al. 2019. Duchenne muscular dystrophy.  BMJ online 23 January 2020.

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