Article: "I can't tell my child they are dying". Helping parents have conversations with their child

When children are left out of conversations about their terminal prognosis, it's usually done with good intent, with a parent wishing to protect their child.  There is however growing evidence that sensitive, timely, age appropriate information from those the child has a good relationship with  is helpful for both child and their family.  The article discusses ways in which families can be supported to have such conversations.

Aldridge, J. et al. 2017.  "I can't tell my child they are dying".  Helping parents have conversations with their child.  Archives of Diseases in Childhood: Education, 102 (4) p 182-187.

Contact the library for a copy

RCN Competencies: Caring for infants, children and young people requiring palliative care

This document is a revision of the first RCN competence framework (2012) produced for nurses and health care support workers and builds on a number of best practice guidance documents and resources.  The four key areas cover communication, holistic care in any setting, managing symptoms and sustaining yourself and the well being of others. Published July 2018.

Available to download

Article: The role of resilience in the sibling experience of paediatric palliative care: what is the theory and the evidence?

The potential impact of children living with a seriously ill brother or sister is reviewed, and a range of outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors.  Implications for clinical practice and future research are considered. 

 

Chin, W. et al. 2018. The role of resilience in the sibling experience of pediatric palliative care: what is the theory and the evidence?   Children 5 (97) online

 

Contact the Library  for a copy or download here   

Article: Evaluation of a pilot service to help young people with life-limiting conditions transition from children's palliative care services

A 2 year project was developed to try to aid transitioning which involved a day service, with occasional overnight trips.  Three focus groups made up of young people, their parents and staff were set up to evaluate the project.  All groups agreed that the project had a positive impact on young people and their families and all were keen for the project to continue. 

Hutcheson, S. et al. 2018. Evaluation of a pilot service to help young people with life-limiting conditions transition from children's palliative care services.  International Journal of Palliative Nursing 24 (7) p 322 - 332.

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Web Site: My adult - still my child

My Adult - Still My Child web site has been developed following feedback from parents of young people who attended the Rainbows Hospice for Children and Young People, and faced real challenges around continued decision-making for their children once they reached adulthood.  The web site is aimed at those new to making Best Interest Decisions and very useful for staff working with young people in hospices and needing to be knowledgeable about key areas.  It covers legal issues, an A-Z jargon buster and Frequently Asked Questions

Article: Methadone for analgesia for children with life-limiting illness

This Australian research is a retrospective review of the use of methadone in 16 children with life-limiting illnesses.  Efficacy, dosing and side effect profiles were analysed.  Fifteen patients had improvements in their analgesia with minimal observed adverse effects. Analysis of dosing and ratios indicated that an individualized approach is required.   The study concluded that specialist assistance with dosing is recommended and further research, including prospective and pharmacokinetic studies also recommended.

Mott, C. et al.  Methadone for analgesia for children with life-limiting illness: experience from a tertiary children's health service.  Children 5 (86) online.

Contact the Library  for a copy or download here   

Article: Integration of hypnosis into pediatric palliative care

This article describes the current practice of integrating hypnosis into advanced pain and symptom management in children and young people's palliative care. Three case reports are provided.

Friedrichsdorf, S. & Kohen, D. P. 2018.  Integration of hypnosis into pediatric palliative care.  Annals of Palliative Medicine.  7 (1) p 136 - 150

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Article: Principles of suctioning in infants, children and young people

Suctioning to clear airway secretions is an important part of the nursing care for children with respiratory conditions.  The article provides an overview of the respiratory tract in infants and children, and the knowledge and skills required with the suctioning of an artificial airway.   The hazards associated with suctioning are discussed along with other nursing considerations.  A multi-choice quiz is also included.

Edwards, E. 2018.  Principles of suctioning in infants, children and young people.  Nursing Children and Young People, 30 (4) p 46 - 53

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Book: Numeracy and clinical calculations for nurses

Numeracy and Clinical Calculations for Nurses is a user-friendly introduction to the subject which guides the reader from the basics through to the core calculations required in a healthcare setting.
Using extensive worked examples the author links the mathematics to real-world situations to help the reader understand the subject in the context of their nursing practice.

Davison, N. 2015. Numeracy and clinical calculations for nurses.  Lantern Publishing.

Contact the Library  for a loan

Book: Learning Disability Nursing At a Glance

Written in a very nice clear concise way, each bite-size chapter also includes easy to follow diagrams.  Learning Disability At A Glance covers chromosomal and genetic disorders, developing communication, learning through play, sensory impairment, adolescence, challenging behaviour, epilepsy and adult issues including common health issues, pain assessment and end of life care.

Gates, B. et al.  2015. Learning Disability At a Glance: Wiley Blackwell.

Contact the Library  for a loan

Book: Moving and Handling Patients At a Glance

Written in a very nice clear concise way, each bite-size chapter also includes easy to follow diagrams.  Moving and Handling Patients At a Glance is aimed at primarily being a practical book with the theory section kept to a minimum.  It covers legal issues, moving and handling techniques from a range of positions, use of hoists and slings, and lateral transfers.

MacGregor, H. 2016. Moving and Handling Patients At a Glance.   Wiley Blackwell.

Contact the Library  for a loan

Book: Infection Prevention and Control At a Glance

Written in a very nice clear concise way, each bite-size chapter also includes easy to follow diagrams.  Infection Prevention and Control At a Glance covers the chain of infection, personal protective equipment, environmental cleaning, sharps, the recognition and management of sepsis, catheter associated urinary tract infections, and a range of infectious diseases.

Weston, D. et al.  2017. Infection Prevention and Control At a Glance.  Wiley Blackwell.

Email for a loan or photocopy of chapters.

Article: Duchenne Muscular Dystrophy: Diagnosis and Management Part 3: primary care, emergency management, psychosocial care and transitions of care across the life span

In part 3, the guidance addresses the issues that prolonged survival bring including challenges related to psychosocial issues and transitions of care. It discusses assessments and interventions aimed at improving mental health and independence, functionality and quality of life in the domains of living including health care, education, employment, interpersonal relationships, and intimacy.

Birnkrant, D. J. 2018. Duchenne Muscular Dystrophy: Diagnosis and Management Part 3: primary care, emergency management, psychosocial care and transitions of care across the life span.  Lancet Neurology. May 17 (5) p 445-455.

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Article: Duchenne Muscular Dystrophy Diagnosis and Management: Part 2 - respiratory, cardiac, bone health, and orthopaedic management.

In part 2 of this update, the authors present the latest recommendations for respiratory, cardiac, bone health and osteoporosis, and orthopaedic and surgical management for boys and young men.  It also acknowledges the effects of long-term glucocorticoid use on the natural history of DMD and the need for care guidance across the lifespan as patients live longer.  They acknowledge the management of DMD looks set to change substantially as new genetic and molecular therapies become available.

Birnkrant, D. J. 2018. Duchenne Muscular Dystrophy Diagnosis and Management: Part 2 - respiratory, cardiac, bone health, and orthopaedic management.  Lancet Neurology 17 (4) p 347-361.

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Article: Duchenne Muscular Dystrophy Diagnosis and Management: Part 1 - diagnosis, neuromuscular, rehabilitation, endocrine, gastrointestinal and nutritional management

In 2014, a steering committee of experts from a wide range of disciplines was established to update the 2010 DMD guidance.  This guidance, published in March 2018 aims to address the needs of patients with prolonged survival, to provide guidance on advances in assessments and interventions, , and to consider the implications of emerging genetic and molecular therapies for DMD.  Part 1 of the guidance presents care includes growth, puberty and adrenal insufficiency, nutrition and dysphagia management.

Birnkrant, D J. et al.  2018.  Duchenne Muscular Dystrophy: Part 1 - diagnosis, neuromuscular, rehabilitation, endocrine, gastrointestinal and nutritional management.  Lancet Neurology, March 17 (3) p 251-267.

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Article: Fathers' experiences of their child's life limiting condition

When a child has a life-limiting condition, both parents are affected by the illness, yet research has largely under-represented fathers' experiences.  Seven fathers were interviewed in this UK study.  The dominant themes were found to be 'experience of the diagnosis', 'living with the illness', 'struggling with emotions' and 'relationship with staff'.  The clinical implications for health care staff are discussed.

Dallos, R. 2018.  Fathers' experiences of their child's life limiting condition: an attachment narrative perspective.  Clinical Child Psychology and Psychiatry, 23 (3) p 381 - 397

Available to download via Plymouth University Open Research Repository

Article: Children with life-limiting conditions in paediatric intensive care units

This study aimed to determine how many children are admitted to PICU with life-limiting conditions (LLC) and their outcomes. The study found that children with a LLC accounted for the majority of admissions, bed-days and deaths in PICU; children  with a LCC were 75% more likely to die in PICU than those without a LLC, and there was a 93% survival at 1 year for children with a LCC. 

Fraser, L. & Parslow, L. 2018.  Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study.  Archives of Diseases in Childhood, 103 (6) p 540 - 542.

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Article: Effects of singing groups on staff well-being: a feasibility study

A piece of research looking at the benefits of staff singing in choirs.    The research found that work well being increased after the singing programme, both immediately after a session and cumulatively over time.  Participants mentioned feeling increasingly enthusiastic, positive and inspired to meet the challenges they experienced at work.  The authors conclude that although there is insufficient evidence to strongly recommend singing groups for staff, this study suggests they are likely to be beneficial to those who attend.

Skingley, A. & Ross, L. 2018.  Effects of singing groups on staff well-being: a feasibility study.  Nursing Standard, 33 (3) p 58 - 63.

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RCN Guidance: Working with dogs in Health Care Settings

Guidance to support organisations considering working with dogs in healthcare settings and allied health environments.   Published May 2018.

Available to download