Guide: Looking after yourself - information for parents after bereavement

This information sheet from Child Bereavement UK acknowledges that grief can be so overwhelming that for many, it may not feel possible for someone to look after themselves.  It talks of the importance of having a routine and social support, and provides advice with managing stress, exercise, sleep, diet and appetite.

Download the guide here

Guide: Explaining miscarriage, stillbirth or the death of a newborn baby to young children

Written by Child Bereavement UK, this updated guidance explains how to answer questions from young children regarding miscarriage, stillbirth or the death of a newborn baby.  It suggests words to use that will help them to understand what has happened.  It notes that children have a much greater capacity to deal with the truth than most adults realise and it's unsaid things that euphemisms that they struggle with.   Useful to give to parents, or for new staff/students.

Download the guide

Guide: Explaining funerals, burial and cremation to children

This information sheet is based on the experiences of some of the families supported by Child Bereavement UK.  It provides suggestions to give the confidence to talk about funerals to children.

Download the guide

Article: Impact of a massage therapy intervention for pediatric palliative care patients and their family caregivers

This study is a US hospital looked at the effect of massage therapy on patient's symptom burden and medication use pattern, and for caregivers, the impact of massage therapy on distress.  A total of 135 10 minute bedtime massages were provided to children and their caregivers.  The FLACC scale was used, with over 80% of children scoring a lower FLACC rate after the massage.  The massage proved effective for all care givers.  The authors conclude massage therapy is a potentially meaningful intervention for pediatric patients with a noted impact on symptom burden, benefit to family caregivers and acceptance by nursing staff.

Weekly, T. et al. 2018. Impact of a massage therapy intervention for pediatric palliative care patients and their family caregivers.  Journal of Palliative Care epub.

Contact the library  for a copy

Article: Understanding the human and system factors involved in medication errors

Nurses, more than any other healthcare professional group are principally involved in medication administration.  This article recognises the complexity of why medication errors occur and considers the many factors involved, including those from an individual and organisational perspective.  It adopts a solution focused approach, based on the evidence underpinning the knowledge of medication errors.

Gluyas, H. 2018. Understanding the human and system factors involved in medication errors.  Nursing Standard, 33 (6) p 50 - 56.

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Article: Transforming a family's end-of-life experience: stopping the trafficking

Modern slavery and human trafficking is a phenomenon infrequently reported in hospice and palliative care literature.  In this case study, a children's hospice describes the end-of-live care for a baby from two days to five weeks old and the support provided to his  mother, who the hospice team believed to have been trafficked into the UK.

Ward, B 2018. Transforming a family's end-of-life experience: stopping the trafficking. European Journal of Palliative Care, 25 (3) P102 - 104.

Article: Towards developing an ethical framework for decision making in long-term ventilation in children

This article discusses the various considerations to be made when deciding to initiate or continue long term ventilation (LTV).  It describes the process that should be followed and outlines the options available for the resolution of conflict around LTV decision making.   A consensus view is put forward as an ethical framework for decision making in children requiring LTV.

Ray, S. et al. 2018 Towards developing an ethical framework for decision making in long-term ventilation in children. BMJ Archives of Disease in Childhood 103 p 1080-1084.

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Book chapter: Advance care planning: thinking ahead for parents, carers, children and young people.

The chapter looks at the spectrum of conditions involved requiring advanced care planning in children's palliative care.  It discusses the challenges, the tools and pathways available to support this and maintaining support for the family at the time of and following death.

Thompson, A. 2018.  Advance care planning: thinking ahead for parents, carers, children and young people.  In: Thomas, K. et al.  Advance Care Planning in End of Life Care.  2nd Edition. Oxford University Press. p171 - 180.

Contact the library for a copy.

Article: Intensive Interaction and complex health needs: "Tuning-in" the cornerstone of effective practice

This article describes the intensive interaction approach and how it can be used with people who spend a lot of time receiving physical, nursing and medical care and treatment.  The focus is on the crucial importance of tuning-in.  Some ideas are presented for how intensive interaction can most effectively be provided for people with complex health needs and within a hospital or care setting.

Calveley, J. 2018 Intensive Interaction and complex health needs: Tuning-in - the cornerstone of effective practice. PMLD LINK, 30 (2) p 38 - 41.

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Guidance: When a child dies: a guide for parents

Published by NHS England, the guide has been put together by bereaved parents, support organisations and professionals.  It's for parents and carers of a child under the age of 18 who has died to help understand some of the things that will happen and the support available.  It includes information about the medical certificate, possible further investigations, the Child Death Review panel, and a number of things a parent/carer is required to do.

Download guidance here

NHS England, 2018.  When a child dies: a guide for parents and carers.

Article: Using cannabis to heal

This article looks at the changes in law allowing medicinal cannabis to be prescribed for "exceptional clinical needs".  It looks at the restrictions on prescription, discusses the situation in countries where cannabis is already legal, and a number of issues UK nurses will need to be aware of when the change in law is brought in.

Jones, Berry, S. 2018.   Using cannabis to heal.  Nursing Standard, 33 (6) p 51 - 54.

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Article: The role of hospice in the transition from hospital to home for technology-dependent children - A qualitative study

This paper reports on the experiences of a children's hospice from the parents and hospice staff perspective in providing step-down care, assisting the transition from hospital to home.  The article was first published in 2017, and reports on part of a study carried out in 2013.  The multiple benefits of hospice step down care was evident.  Families had described their lives "on hold" while in hospital, where the hospice was considered a home-like environment where they were "living, not existing".  Professionals highlighted the role of hospices in empowering families.

Price, J 2018 The role of hospice in the transition from hospital to home for technology-dependent children - A qualitative study. Journal of Clinical Nursing 2018 27 p 396 - 406

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Article: Siblings' voices: a prospective investigation of experiences with a dying child

This article looks at a study carried out over two years to find out more of the experiences of siblings when a brother or sister is dying.  The insights from 10 siblings revealed complex issues, both personal and with the ill child, their families and peers.  These experiences were both sources of strain and of support.

Russell, C. et al.  2018.Siblings' voices: a prospective investigation of experiences with a dying child.  Death Studies.  42 (2) p 184-194

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Article: Supporting fathers who want to be involved in providing healthcare for their child

An increasing number of fathers want to be involved in providing healthcare to their child, yet little is known about how best to engage, educate and upskill this parent.   This article describes a literature search carried out to locate, describe and summarise the evidence of fathers performing healthcare in acute, chronic or long term conditions and the type of support needed.  The author found there was very limited evidence or research available.  Recommendations for healthcare staff include involving fathers as early as possible, being aware of maternal "gatekeeping", and focusing on fathers' information needs, identify skills central to their child's care and assist the fathers in acquiring these skills.

Laws, T. 2018. Supporting fathers who want to be involved in providing healthcare for their child.  Nursing Children and Young People, 30 (5) p 18 - 23

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Article: Two futures: financial and practical realities for parents living with a life limited child

This study looked at the financial and employment situation that parents of life-limited children experience.  The first part of the article includes interviews with parents describing how their working and home lives are overwhelmingly affected by their child.  In addition, many families, after their child died fell into further financial hardship.  In the second part of the article, the author argues that from a moral perspective the state should financially supports families both prior and after their child's death, ranging from employment support, financial help and housing.

Rancall, D. 2017 Two futures: the financial and practical realities for parents living with a life-limited child. Comprehensive Child and Adolescent Nursing 40(4) p 257-267.

Contact the library  for a copy

Article: Tay-Sachs disease

Tay-Sachs disease is a rare inherited condition that mainly affects babies and young children.  It stops the nerves working properly and is usually fatal.    This article written for student nurses provides an overview of the disease, who it affects, the genetics, the three most common forms, and palliative care management.  It includes a short case study and the care received at a hospice.

Tay-Sachs disease, 2018, Nursing Children and Young People, 30 (5) p 17

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Article: The role of clinical psychology in UK Hospices.

NICE guidance in 2004 recommended a tiered approach to psychological care within cancer care with the provision of Clinical Psychologists to support other professionals deliver psychological care to patients.  However little is known currently about this  role within UK hospices and a survey was undertaken to address this gap.  The survey included quantitative and qualitative items about their roles and activities and views on working in this setting. Eighteen clinical psychologists responded and there was considerable variance in how their roles were organised with a range of therapeutic approaches used. 

Russell, C. & Fountain A.  2018. The tole of clinical psychology in UK hospices.  BMJ Supportive & Palliative Care,  e-pub.

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Article: An urgent call for collaboration: the future of research in paediatric palliative care

The author Lorna Fraser makes an impassioned plea for partnership between researches planning studies in paediatric palliative care and those working in other specialties, so that all may benefit from the shared learning produced by large scale, collaborative studies conducted across clinical boundaries.

Fraser, L. 2018.  An urgent call for collaboration: the future of research in paediatric palliative care.  European Journal of Palliative Care, 25 (2) p 56 - 58.
Contact the library  for a copy

Article: Developing resilience: the role of nurses, healthcare teams and organisations

This article explores resilience and suggests ways in which resilience can be developed by individuals and in collaboration with others, resulting in resilient healthcare teams and organisations.  It aims to help healthcare staff develop their resilience, while also improving their understanding of the complex factors that can affect their coping capacity.

Barratt, C. 2018  Developing resilience: the role of nurses, healthcare teams and organisations. Nursing Standard, October 33 (7) p 43 - 49.

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New Book: Disability rights handbook 2018/19: a guide to benefits and services for all disabled people, their families, carers and advisors

The book is a comprehensive guide to social security, tax credits, and also covers practical help and services, and other essential matters including care and support services, income tax, council tax, housing grants and equality legislation.  Useful for staff if wishing to provide up to date information on the financial help and benefits families could be entitled to.   Sections include mobility, help for carers, housing costs, grants, and children and young people section.

Available for loan or individual chapters can be requested.  More details in the library catalogue

New Book: Law and professional issues in nursing

Written in a clear and straight forward language the book offers a "crash course" to healthcare staff in law and legal obligations.  It covers decision making, professionalism, consent and children, record keeping, confidentiality, plus a range of other areas.  It's mapped to the NMS standards and essential skills cluster, and includes case studies and activities.

Griffiths, R. & Tengnah, C. 2017.  Law and professional issues in nursing.  4th Edition. Sage

Available for loan or individual chapters can be requested.  More details in the
library catalogue

New Book: Reflective practice in nursing

Using clear language and insightful examples, case studies and scenarios, the book shows what reflection is, why it's important and how it can be used to improve practice. 

Howatson-Jones, L. 2016.  Reflective Practice,  3rd Edition. Sage. 

Available for loan or individual chapters can be requested.  More details in the library catalogue.

New Book: Leadership, management and team working in nursing

Written in a clear and straight forward language the book covers team working, negotiation skills, mentoring, and how to create a learning environment.  It also looks at developing confidence as a manager and leader.  This 3rd edition has been updated to include the revised standards of proficiency from the NMC.

Ellis, P. 2019.  Leadership, management and team working in nursing.  3rd Edition. Sage

Available on loan from the library or individual chapters can be requested.  More details in the library catalogue

New Book: Creating sensory play at little or no cost: creative ideas using everyday resources

The book contains hundreds of ideas to create sensory play experiences considering touch, vision, taste, hearing and smell, all at little or no cost.  It also includes chapters to support balance and body awareness.

Usher, W. (2013), Creating sensory play at little or no cost: creative ideas using everyday resources, 2nd edition, The Play Doctors.

Available on loan or individual chapters can be requested.  More details in the library catalogue