This study involved in depth interviews with 19 parents who were responsible for carrying out procedures they believed caused distress for their child. Procedures included care and changing of nasogastric tubes, tracheostomy tubes, and oral and nasal suctioning. The findings are presented around five key themes including emotional experiences and response, making sense of the role and changes in experiences over time. Parents identified a number of ways they would like to be supported by healthcare staff with this responsibility.
Spiers, G., & Beresford, B., & Clarke, S. (2017) "It goes against the grain" the experiences of parents administering distressing procedures for their child at home. Health Expectations, 2017 online p1 - 8.
Contact the library for a copy
A shorter research summary report is also available from the University of York Web site:
Produced by the East Anglia's Children's Hospices (EACH) Library & Information Service - www.each.org.uk/library
Article: "Place bonding" in children's hospice care: a qualitative study
This piece of research examined parents' perspectives and experiences of a hospice in the UK, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision. Focus groups and in-depth semi-structured interviews were used with parents who both used and didn't use the hospice. The research found that for parents, finding a place where they belonged and felt at "home" made the decision to accept help in caring for their child more acceptable.
Dunabar, H., Carter, B & Brown, J. 2018. "Place bonding" in children's hospice care: a qualitative study. BMJ Supportive & Palliative Care, August published online.
Contact the library for a copy
Dunabar, H., Carter, B & Brown, J. 2018. "Place bonding" in children's hospice care: a qualitative study. BMJ Supportive & Palliative Care, August published online.
Contact the library for a copy
Guide: Nutrition guide for young people and adults with Duchenne Muscular Dystrophy (DMD)
DMD Pathfinders is a user-led charity which promotes choice, control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy in the UK. To produce this guide they worked together with health professionals around the world and the experiences of over 90 adults with DMD and their families who share their stories The guide covers the nutritional changes that occur over time, how to maintain a healthy diet, ventilation and nutrition, chewing and swallowing problems, feeding tubes, managing constipation, common GI problems and nutrition top tips.
Download here or request copy on loan from the library
Download here or request copy on loan from the library
Book: Childhood Epilepsy: a handbook for parents
Published by Young Epilepsy, the handbook has been written to support families with a child with epilepsy. Useful for new staff who may not know too much about epilepsy, the handbook is informative with input from Great Ormond Street and parents who told the authors what they would like to have known when their child was first diagnosed. It covers how epilepsy presents, the different types of seizures, epilepsy syndromes, managing seizures, treatments for epilepsy, living with epilepsy, learning and behaviour problems, and epilepsy and adolescence.
Contact the library for a loan - copies available at each of EACH sites.
Contact the library for a loan - copies available at each of EACH sites.
Article: Seizure management in children requiring palliative care: a review of current practice
Controlling seizures in children approaching death can be difficult, and there is limited evidence on best practice. This article, published last year compared current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine (APPM). They reviewed case notes over a 10 year period and found a wide range of pharmacological approaches, often exceeding APPM dose recommendations. Despite this, safe and effective seizure control was possible in all settings.
Harris, N. et al. 2017. Seizure management in children requiring palliative care: a review of current practice. BMJ Supportive & Palliative 2017 published online.
Contact the library for a copy
Harris, N. et al. 2017. Seizure management in children requiring palliative care: a review of current practice. BMJ Supportive & Palliative 2017 published online.
Contact the library for a copy
Article: Safe and effective use of supplemental oxygen therapy
This article provides an overview of the anatomy and physiology in relation to oxygen delivery to the lungs and tissues in the body and outlines the common indications and contraindications for supplemental oxygen delivery. It also discusses the approaches health care staff can adopt to assess a patient's clinical need as well as the safety considerations required. A good article for CPD, and could be used for nurses undergoing revalidation. It includes a multiple choice quiz at the end.
Allibone, E. 2018. Safe and effective use of supplemental oxygen therapy. Nursing Standard, 33 (5) p 43 - 49.
Contact the library for a copy
Allibone, E. 2018. Safe and effective use of supplemental oxygen therapy. Nursing Standard, 33 (5) p 43 - 49.
Contact the library for a copy
Article: How is the online world changing the face of how people grieve?
This article explores the changing nature of grief in many modern societies, including the online world and discusses the new practices that are expanding and changing the way people grieve and remember those who have died.
Philips, M. 2018. How is the online world changing the face of how people grieve? Grief Matters, 19 (3) p 74 - 77
Philips, M. 2018. How is the online world changing the face of how people grieve? Grief Matters, 19 (3) p 74 - 77
New Book: Medicines management at a glance
Written specifically for nurses, the book is divided into three sections, the first introduces key topics within clinical pharmacology and medicines management including, numeracy, pharmacokinetics, routes of administration, and pharmacodynamics. The second and final sections cover the management of medicines for common medical conditions, drug interactions, side effects, and safe and effective prescribing.
Young, S. & Pitcher B. 2016. Medicines management for nurses at a glance. Wiley Blackwell.
Contact the library for a loan
Young, S. & Pitcher B. 2016. Medicines management for nurses at a glance. Wiley Blackwell.
Contact the library for a loan
Article: Anticipatory prescribing and advance care planning in palliative care for children and young people
This article focuses on the symptom management aspects of the advance care plan, and specifically the challenges faced by prescribers in anticipating the distressing symptoms a child is likely to experience at end of life and prescribing medicines to manage these symptoms.
Tatterton, M. 2018. Anticipatory prescribing and advance care planning in palliative care for children and young people. Nurse Prescribing, 16 (5) p 228 - 233
Contact the library for a copy
Tatterton, M. 2018. Anticipatory prescribing and advance care planning in palliative care for children and young people. Nurse Prescribing, 16 (5) p 228 - 233
Contact the library for a copy
Article: Achieving successful subcutaneous access in palliative patients
Subcutaneous administration of medications is a well-recognised route for delivering prescribed therapies, in particular analgesia for patients requiring palliative care. This article discusses how technological developments are resulting in subcutaneous access devices that are easy to insert and can meet the needs of a growing population, as well as complying with the latest guidelines on sharps safety.
Gabriel, J. 2018. Achieving successful subcutaneous access in palliative care. International Journal of Palliative Nursing, 24 (6) p 282 - 287.
Contact the library for a copy
Gabriel, J. 2018. Achieving successful subcutaneous access in palliative care. International Journal of Palliative Nursing, 24 (6) p 282 - 287.
Contact the library for a copy
Article: Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care
This letter reports on a survey recently administered to investigate the current off-label prescribing of fentanyl for breakthrough pain in paediatric palliative care in the UK and to ascertain any barriers to use. The survey was sent to 124 members of the Association of Paediatric Palliative Medicine (APPM). The response rate was 44 members (36%). Respondents were mainly consultants and associate specialist grade clinicians who had worked for over 5 years in this field. Less than half had prescribed buccal fentanyl and only 4 had prescribed intranasal fentanyl. The article provides more details of prescribing practice and reasons for the low uptake.
Harrop, E. et al. 2018. Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care. BMJ Supportive & Palliative Care, September 8 (3) p
Harrop, E. et al. 2018. Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care. BMJ Supportive & Palliative Care, September 8 (3) p
Guide: A Guide to Children's Palliative Care: supporting babies, children and young people with life-limiting and life-threatening conditions and their families
This 4th edition from Together for Short Lives provides a very good overview of children's palliative care, what it is, it's principles, purpose and importance to children and families. The guide seeks to cement the positive advances in children's palliative care since the last edition in 2009, and sets out a vision for the future sustainable development of children's palliative care. It includes a new and enhanced section on research, acknowledging the need to expand the evidence base for children's palliative care.
Download here
Download here
New Book: Palliative care nursing at a glance
Although primarily a book for adult palliative care nursing, the book has chapters that can also be relevant for palliative care for young adults, including symptom management, pain control, communication, advance care planning, ethical issues, and managing end of life care.
Ingleton, C. & Larkin, P J. 2015. Palliative care nursing at a glance. Wiley Blackwell.
Contact the library for a loan
Ingleton, C. & Larkin, P J. 2015. Palliative care nursing at a glance. Wiley Blackwell.
Contact the library for a loan
New Book: Anatomy and physiology for nurses at a glance
Combining great illustrations with accessible and informative text, the book covers all the body systems. It breaks down complex concepts and a useful resource for staff in education roles and delivering training.
Peate, I. & Nair, M. Anatomy and physiology for nurses at a glance. Wiley Blackwell
Contact the library for a loan
Peate, I. & Nair, M. Anatomy and physiology for nurses at a glance. Wiley Blackwell
Contact the library for a loan
Article: What is the cost of palliative care in the UK? A systematic review
Little is known about the cost of a palliative care approach in the UK, and there is an absence of robust activity and unit cost data. The aim of this paper was to explore different approaches for capturing activity and unit cost data. Ten papers were identified which met the study inclusion criteria. The majority of papers explored costs from a NHS perspective. Particular challenges were noted with capturing activity and cost data for hospice care. The authors were not able to provide an aggregate cost of palliative care in the UK and noted the costs of hospice care and informal care are often neglected in economic studies.
Gardiner, C. et al. 2018. What is the cost of palliative care in the UK? A systematic review. BMJ Supportive & Palliative Care. 8 250 - 254.
Contact the library for a copy
Gardiner, C. et al. 2018. What is the cost of palliative care in the UK? A systematic review. BMJ Supportive & Palliative Care. 8 250 - 254.
Contact the library for a copy
RCN Guidance: Supporting children's nurses working outside of designated children's wards
Updated in May 2018 the guidance has been designed as a checklist that can be used when considering the support, guidance, management and education framework required for children's nurses working outside of a designated ward/department.
Download here
Download here
Guidance: Voluntary standards for community children's nurse education and practice
The Community Children’s Nurse (CCN) role is highly complex and requires skills in negotiating, coaching, teaching and supporting the families and carers of babies, children and young people with disabilities, complex conditions, life-limiting conditions and those requiring palliative and end of life care. The Queens Nursing Institute (QNI) and QNI Scotland worked with leading experts in the UK to develop a set of standards to support children's community nurse (CCN) education and practice including a Specialist Practice Qualification (SPQ). The standards were launched at the end of September 2018.
Download here
Download here
New Book: Nursing and healthcare research at a glance
Covering a broad range of topics, the book provides an overview to the principles and reality of research and its implementation within the education and practice environment. The 6 key areas covers the main elements of accessing evidence and literature, quantitative research, qualitative research, research techniques, research with special groups including children, children with disabilities and family carers.
Glasper, A. & Rees, C. 2017. Nursing and healthcare research at a glance. Wiley Blackwell.
Glasper, A. & Rees, C. 2017. Nursing and healthcare research at a glance. Wiley Blackwell.
Article: Meeting the needs of young adults with life limiting conditions: a UK survey of current provision and future challenges for hospices
The aim of this study was to seek the views of UK children's and adult hospices on the availability and challenges of providing services for the 55,721 young adults between the ages of 18 - 40 with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse. The data was collected in 2016 from 76 hospices via an online survey. The survey findings showed a lack of existing adult respite services; lack of funding and capacity; lack of skilled workforce in adult hospices; and the need for better integrated service provision. There were examples of good collaborative working but with an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions.
Knighting, K. et al. 2018. Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices. Journal of Advanced Nursing, May 2018 (epub)
Contact the library for a copy
Knighting, K. et al. 2018. Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices. Journal of Advanced Nursing, May 2018 (epub)
Contact the library for a copy
New Book: Infection prevention and control at a glance
This highly visual and dynamic book is a thorough resource for healthcare staff wanting to consolidate and expand their knowledge in infection prevention and control. It provides a concise and simple approach to a vast and complex subject, and equips the reader with key information in relation to aspects of infection control.
Weston, D. et al. 2017. Infection prevention and control at a glance. Wiley Blackwell.
Contact the library for a loan
Weston, D. et al. 2017. Infection prevention and control at a glance. Wiley Blackwell.
Contact the library for a loan
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