Family Guide: Caring for your child at end of life

The aim of this guide is to provide families with practical support at this most difficult of times.  It answers some of the questions families might have, with some reflections from families on their own experience of losing a child.  It sets out what should be expected from children's palliative care services with useful links to further sources of information and support.

Together for Short Lives, 2019.  Caring for your child at end of life: a guide for parents and carers.
Available to download

Guide: Caring for a child at end of life: a guide for professionals on the care before death, at the time of death and after death

Caring for a child at end of life aims to provide a practical toolkit for all practitioners providing end of life care to babies, children and young people. It sets out key standards and goals for good practice alongside links to useful sources of information, legislation and regulations.  Updated from 2018.

Together for Short Lives, 2019.  Caring for a child at end of life: a guide for professionals on the care of children and young people before death, at the time of death and after death.
Available to download

Article: Long-term nurse-parent relationships in paediatric palliative care

Close, long-lasting relationships frequently exist in children's palliative care and can enhance emotional support and influence how parents manage their role in the face of uncertainty.  This literature review on the long term relationships between parents and nurses in children's palliative care identified 4 main themes: bonds, attachment and trust; sharing the journey; going the extra mile and boundaries and integrity.  All themes revealed an element of tension between closeness and professionalism.  Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses is thought to be useful for pre and post registration nurse education.

Brimble, M. 2019. Long-term nurse-parent relationships in paediatric palliative care: a narrative literature review.  International Journal of Palliative Nursing, 25 (11) p 542-550.

Contact the library for a copy

Article: Missed opportunities: incomplete and inaccurate recording of paediatric early warning scores (PEWS)

This study, carried out at a children's specialist hospital in the UK looked at how PEWS are recorded, in particular looking at the completeness and accuracy of the recordings.  Data was extracted for the 48 hour period before a critical deterioration event. 297 case events were analysed.  Findings showed only 35.9% of observation sets contained a complete set of vital signs parameters.  More errors resulted in the PEWS value being underscored rather than overscored.  The authors conclude the inaccuracy of PEWS recordings may jeopardise recognising deterioration and Smart technology may offer a solution.

Chapman, S. 2019. Missed opportunities: incomplete and inaccurate recording of paediatric early warning scores (PEWS).  Archives of Diseases in Childhood, 104 (12), p1208 - 1213.

Contact the library for a copy

Article: Pet therapy in pediatric palliative care

An easy to read article from the US Children's Palliative Care Organisation on the use of pet therapy and the difference Sundance a 2 year old Golden Retriever makes to families and staff on their palliative care unit. 
Available online (pages 50 - 52) or contact the library for a copy

Article: Pediatric massage: a gentle approach for pediatric palliative care

An easy to read article from the US Children's Palliative Care organisation on the use of massage and the benefits it can bring.  It covers massage therapy for pain relief, and specific approaches and considerations.
Available online (pages 46 - 49) or contact the library for a copy

Article: Clinical hypnosis and hypnotic language in pediatric palliative care

An easy to read article from the US Children's Palliative Care organisation on the use of hypnosis.  It covers what it is, how it's used, and the personal experiences of the author who has taught hypnosis to over 150 patients, two thirds of which have been children, ranging from age 5 to 15.
Available online (pages 42 - 45) or contact the library for a copy

Web site: Safety in numbers

Part of the RCN web site, the aim is to provide the practical maths knowledge that staff need in their  day to day work and medicines administration.  Provides lots of information, tips and examples of working out medicines calculations.  Good revision or someone wanting to gain more confidence in this area.
https://www.rcn.org.uk/clinical-topics/safety-in-numbers

Information for families: When your baby dies - a particular kind of grief

When a baby dies, parents speak of a grief that has no comparison. This guide from Child Bereavement UK, updated in 2019 includes input from parents, with some feelings and thoughts that parents are very likely to experience.
Download here

Information for families: Explaining miscarriage, stillbirth or the death of a newborn baby to a young child

When a new baby is expected in a family, most young children will be looking forward to the birth as much as anyone else.  Having to explain the death of an expected baby brother or sister is an incredibly hard to thing to do for parents who are struggling with their own grief.  This leaflet explains how to answer questions from young children and suggests words to use that will help them understand what has happened. 
Download from Child Bereavement UK

Information for families: Explaining to young children that someone has died

Talking to a young child about death and dying is incredibly difficult and can feel too hard to do.  This leaflet provides information and suggestions on what language and phrases to use.  It is not intended as a script but are suggestions to help with what to say, how much to say when, and how to say it.
Download from Child Bereavement UK

Information for families: The death of a grandchild

When a grandchild dies, grandparents find themselves in the position of dealing with their own grief, while having to witness the grief of their son or daughter. The leaflet talks about the uniqueness of this grief and the array of emotions that are commonly felt.
Download from Child Bereavement UK.

Information for families: When a child dies - a loss like no other

No-one expects their child to die before them.  For some the tragedy feels too overwhelming.  This information sheet includes quotes from bereaved parents who attended the Child Bereavement UK bereavement groups and contains information on ways that might help bereaved parents to make small steps towards learning to live again.
Download from Child Bereavement UK

Information for families: Saying goodbye to your baby or child

After the death of a much longed for baby or child, thinking about what to do next can be overwhelming.  Every parent reacts differently and how each decide to say goodbye their child or baby will vary.  This leaflet from Child Bereavement UK provides details on some of the options available and includes links to other organisations that may help.
Download here

Information for families: Partners may grieve differently

The way two people in a relationship deal with grief can sometimes differ and this can put an additional strain on a relationship when a couple face bereavement together.  By understanding these differences, couples can begin to achieve balance with each other and themselves. Two page leaflet from Child Bereavement UK updated in 2019. 
Download here

Article: Clinical practice guidelines for palliative care in children and other strategies to enhance shared decision-making: paediatricians' critical reflections

In the Netherlands children have a right to be involved in deciding about their care from the age of 12 and a majority of children and parents consider . This Dutch study describes the implementation of a Palliative Care Guideline with a focus on shared decision making (SDM).  The study aimed to explore paediatricians attitudes and thoughts on the guideline and the SDM content.  Fifteen paediatricians were recruited and interviewed.  Most agreed the patient decision aids were beneficial, however needed to focus more on how to practice SDM with the addition of multiple options.

Dreesens, D. et al. 2019. Clinical practice guidelines for palliative care in children and other strategies to enhance shared decision-making: paediatricians critical reflections.  BMC Pediatrics.

Available to download

Article: Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families

The aim of this international review was to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved.  Sixty papers were included in the study.  They found trusted relationships with healthcare professionals are essential, and this in turn triggers a number of underlying mechanisms including advocacy, decision making and shared emotional impact, which lead to important outcomes being achieved.  A number of recommendations for practice are made.

Mitchell, S. et al. 2019.  Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: a realistic review.  Palliative Medicine, epub.

Contact the library for a copy (not available to hospices outside the UK)

Article: Moving beyond using the term "Poor Prognosis" in children with severe neurological impairment

This opinion piece discusses the appropriateness of continuing to use the phrase "poor prognosis" with parents of children with severe neurological impairment (SNI).  The authors believe it creates two substantial concerns: firstly the term does little to improve clarity and transparency and secondly it creates a value based judgement of what is poor.  They invite healthcare professionals to move beyond using this term in decision making conversations for children with SNI.

Bogetz, J. 2019.  Article: Moving beyond using the term "Poor Prognosis" in children with severe neurological impairment : a linguistic shortcut better avoided.  JAMA Pediatrics epub published online November 25.

Contact the library for a copy (not available to hospices outside the UK)

Article: Teaching nurses to teach: a qualitative study of nurses' perceptions of the impact of education and skills training to prepare them to teach end of life care

In the UK, much adult end of life care is provided by specialist nurses who often have no specific education development to prepare them to teach.  To address this gap, an Education Development Programme (EDP) was developed and delivered to specialist nurses, and then evaluated.  Twenty participants from 3 hospices in the North West of England were sampled and interviewed.  The results showed all participants had developed skills in learning to teach, applying theory to practice, gaining tools to teach and understanding learning styles.  In addition skills to change teaching practice, and increased confidence were noted.  The EDP model is recommended in supporting staff who provide education to generalist staff with differing levels of education and knowledge.

Jack, B. et al. 2019 Teaching nurses to teach: a qualitative study of nurses' perceptions of the impact of education and skills training to prepare them to teach end of life care.  Journal of Clinical Nursing,

Available to download

Article: Long term outcomes of functional neurological disorder in children

Functional neurological disorders (FND) is a diagnostic term for the various ways individuals experience abnormalities of nervous system functioning.  This UK study aims to establish the incidence and long term outcomes for children and young adults.  124 individuals met the study criteria.  The most common presentations were seizures, sensory loss and motor symptoms.  The study found the incidence of FND is higher than previously recorded and can have long term implications.

Raper, J. 2019.  Long term outcomes of functional neurological disorder in children.  Archives of  Diseases in Childhood, 104, p1155 - 1160

Contact the library for a copy

"Your Tube": the role of different diets in children who are gastrostomy fed

There are a growing number of parents who are interesting in and/or choosing to feed their children meals they have prepared themselves which are then liquidised and administered via a gastrostomy.  This article provides details of a multicenter study that will take place involving parents, young people and health professionals.  It will gather data on  desired outcomes, variability in diets and reasons, use of oral feeding, perceived benefits of the alternative diet, resources required, and safety issues, and quality of life data.  The paper describes the setting of the study and the involvement of patient and public.

Taylor, J. et al. 2019.  "Your Tube": the role of different diets in children who are gastrostomy fed: protocol for a mixed methods exploratory study.  BMJ Open.
Available to download

 

Article: Virtual reality: endless potential in pediatric palliative care: a case report

This Canadian case study describes the use of Virtual Reality (VR) with a 12 year old girl being supported by a palliative care team.  In hospital, and isolated in a single room due to infection control reasons, it describes the use of a custom made VR experience for her and the potential of using it in children's palliative care.

Weingarten, K. et al. 2019. Virtual reality: endless potential in pediatric palliative care: a case report.  Journal of Palliative Medicine, epub.

Contact the library for a copy (not available to hospices outside the UK)

Article: Nurses as chaperones: legal obligations and implications

This article discusses the role and responsibilities of nurse chaperones and highlights what nurses need to be aware of from a legal perspective so they know not only how to protect patients, but also how to protect themselves.

Marinaccio-Joseph, P. 2019. Nurses as chaperones: legal obligations and implications.  Nursing Times 115 (7) p18-21

Contact the library for a copy