Article: A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience

This article describes the experience of Children's Hospices Across Scotland (CHAS) and their implementation of a telehospice program in response to COVID-19.  It describes the preparation, implementation, technology challenge and lessons learned of offering a paediatric virtual service during February and March 2020.

Ellis, K. 2020.  A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience.  Journal of Pain and Symptom Management, 60 (2) p e40 - 43.

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Article: Approaches to community-based palliative care provision by children's hospices in the UK

This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned needs of children and their families who receive palliative care at home.   An online survey was sent to all children's hospices. Responses were received from 14 (26%) of hospices. The survey revealed 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Care provided at home was either short break care or responsive palliative nursing, consisting of advance care planning, anticipatory prescribing and active symptom control.  Out of hours care was usually offered in the form of telephone support.  The study showed models of community care are evolving to include nurses practicing at specialist and advanced levels allowing more children to be cared for at home.

Tatterton, M. 2019.  Approaches to community-based palliative care provision by children's hospices in the UK.  Nursing Children and Young People, 31 (5) p 42-48.

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Article: Hospice and palliative care for children: converging stories

An interesting article about children's hospices and particularly useful for anyone working in a commissioning role.  The article notes that the services hospices offer are highly valued by families but it is not always clear that hospices can be described as "specialists", making it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector.  The article provides a detailed look at the history of the hospice movement, the differing services they offer today, and then considers the future.

Hain, , R. 2019.  Hospices and palliative care for children: converging stories.  British Medical Bulletin, 130 (1) p 81 - 87.

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Article: Children's unmet palliative care needs: a scoping review of parents' perspective

An interesting article, identifying in the literature the views of parents and their support needs in children's palliative care.  The most commonly reported unmet needs were respite services, communication and interpersonal skills of professionals, co-ordination and organisation of services and emotional and psychological  support. The authors note a number of limitations to the review, including the fact that over half the papers reviewed were conducted over 10 years ago so it is likely that many of these services may well have changed.

Constantinou, G. et al. 2019.  Children's unmet palliative care needs: a scoping review of parents' perspective.  BMJ: Supportive and Palliative Care, epub.

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Article: Dilemmas of e-rostering old and new: towards intelligent systems?

By 2021 the NHS wants all clinical staff to be rostered electronically.  Following on from an article published in 2014 on e-rostering, this article takes stock of progress made since then, and the new challenges still to be solved.

Drake, R. 2019.  Dilemmas of e-rostering old and new: towards intelligent systems?  Nursing Times, 115 (6) p 19 - 23.

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Article: Nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms

Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors and their families are offered limited bereavement support. This article describes a partnership between an organ donation nursing team and a children's hospice where families were offered bereavement support from the hospice, and their child's body was cared for in a "cool room" after death.  The research explored the perceptions and experiences of nurses' from both the hospice, and the organ donation team.

Tatterton, M. J. et al.  A qualitative descriptive analysis of nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms.  International Journal of Palliative Nursing, 25 (4) p 166 - 175.

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Article: Development and assessment of a measure of parent and child needs in pediatric palliative care.

In the US children's palliative and end of life care has no evidence-based needs assessment measure.  This article describes the development of the Parent and Child Need Survey (PCNeeds) which incorporates issues specific to the pediatric palliative and hospice population.  It includes the parent-child relationship, the illness' impact on the family and unique decision making needs.  The study revealed the tool could be a useful tool in individual assessment, however the tool should also cover more diverse parent and patient populations and test areas related to the needs of siblings and parents' relationships.

Donnelly, J. et al. 2018. Development and assessment of a measure of parent and child needs in pediatric palliative care.  Journal of Pain and Symptom Management, 55 (4) p1077-1084.

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Book Chapter: Care of children and young people with life-limiting illness

When a child is diagnosed with a life-limiting condition, families need high quality, flexible support designed to meet their individual needs. This chapter looks at this care, illustrated through two case studies to encourage the reader to think from the child and family's perspective.   It covers what classifies as a life-limiting illness, the role of children's hospices, care of children, and transition to adult services.  A good overview for students or staff new to children's palliative care.

Menezes, A. & Lewin-Taylor, T.  Chapter 34: Care of children and young people with life-limiting illness.   In: Price, J. & McAlinden, O. (Eds) 2018. Essentials of Nursing Children and Young People.  Sage Publishing. p530-538

Article: The nurse-led model of hospice care

This paper describes the development of a nurse-led model of hospice care in a Welsh hospice when the medical model of hospice provision was no longer financially viable.   It describes how the model has developed, allowing the nurse practitioner role to be extended to an autonomous level of hospice care not practiced anywhere else in the UK.  The model has now secured the future of the hospice ensuring a sustainable service for the community it serves.

Hickish, D. & Roberts, D. 2019. The nurse-led model of hospice care.  International Journal of Palliative Nursing, 25 (3) p 143 - 149.

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Article: Advancing the science of outcome measurement in paediatric palliative care

There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care.  This article discusses the findings of an expert group who met to discuss the domains and items to include in a PCOM and the initial steps required in this process.

Harding, R et al. 2019.  Advancing the science of outcome measurement in paediatric palliative.  International Journal of Palliative Nursing, 25 (2) p 72 - 76.

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Article: Top Ten Tips Palliative Care Clinicians Should Know About Caring for Children

This articles provides a review of the unique components of pediatric palliative care, including key roles within an interdisciplinary team, the complexities of symptom management in children with serious illness, and pointers for discussions with families regarding a patient's quality of life and goals of care.  Particularly useful for medical students and other healthcare professionals new to the specialty to get an overview of the key areas.

Jordan, M. et al. 2018.  Top Ten Tips Palliative Care Clinicians Should Know About Caring for Children.  Journal of Palliative Medicine, 21 (12) p 1783 - 1789

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.

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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.

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Article: Exploring the rewards and challenges - a qualitative study of a multi-disciplinary children's hospice care team

The research took place in a UK children's hospice, involving semi-structured interviews with 34 staff, and 3 focus groups with 17 staff.  Participants identified rewards and challenges related to the direct work with children and families, team dynamics, organisational structure, individual resilience and job motivation.  Many participants identified training needs to help them feel more confident and  also expressed concern about work related stress for themselves and colleagues which they felt unable to discuss at work.  The authors concluded opportunities for regular reflection to come together for support and learning are important and demonstrate an organisational commitment to staff wellbeing and development.

Taylor, J. and Aldridge, J. 2017.   Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a multi-disciplinary children's hospice care team.  BMC Palliative Care,

Available to download here

Article: Pediatric palliative care for children with progressive non-malignant diseases.

This article describes the broad epidemiology of the non cancer conditions seen in children's palliative care.  It discusses terminology and classification, symptom management, emotional support, social issues, the disease trajectory and areas needing focused research.

Siden, H., 2018.  Pediatric palliative care for children with progressive non-malignant diseases.  Children.  5 (2) online version

For a copy of the article please fill out the online request form

Report: The state of hospice services in the UK 2014 - 2017: Findings from the Care Quality Commission

Between October 2014 and January 2017, the CQC inspected over 200 hospice services in England. They found hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good.  They found that hospice leaders and frontline staff displayed a strong commitment to providing truly person-centred, compassionate care and support to people using their services, and their loved ones. They also developed strong relationships with other services in the area.   However, it was noted there is more to be done to make sure that everyone, regardless of their background or circumstances, can access high-quality end of life care.
View full report here

Article: Specialist paediatric palliative care services: what are the benefits?

This article examines the research evidence regarding the benefits for a specialist paediatric palliative care (SPPC) service, supported by a physician with specialist training.  Eight studies, from 5 countries were identified and provides a body of  low level evidence.  Themes across all studies suggest these services improve quality and life and symptom control and can impact positively on place of care and family support. 

Mitchell, S. 2017. Specialist paediatric palliative care services: what are the benefits?  Archives of Diseases in Childhood, 2017 102 p923-929.

Article: Keeping all options open: Parents' approaches to advance care planning

This study uses semi-structured interviews relating to the approaches used in, and experience of, advance care planning for children and young people with life-limiting conditions. It highlights that parents' approaches vary according to the type of decision required and also the time when the decision is sought. The study showed that parents views often change over time and it's important to allow them to keep their options open.

Beecham, E et al. 2017. Keeping all options open: Parents' approaches to advance care planning. Health Expectations (20) p 675-684 [online]

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Report: The state of the UK children's hospice workforce: a report on the demand and supply of nurses to children's hospices

This report sets out what Together for Short Lives found when they carried out a snapshot survey of nurse vacancies at UK children’s hospice organisations in December 2016. They found that:
• the children’s hospice nurse vacancy rate has grown since 2015
• it is getting harder to recruit nurses to posts with increasing shortages of more experienced nurses
• the nursing shortfall means that children’s hospices are being increasingly forced to cut back the vital palliative care they can offer to families.

Together for Short Lives, 2017.  The state of the UK children's hospice workforce.  Together for Short Lives.

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Article: Prioritisation of future research topics in paediatric palliative care in Ireland

In children's palliative care, there is a notable overlap between the needs of children requiring palliative care and those with disabilities and other complex needs, resulting in care being provided by a range of voluntary and statutory agencies.  As a new and highly specialised field, there is a need to develop an evidence-based approach to providing children's palliative care.

Quinn, C., McCarthy, S., Devins, M. et al. 2017.  Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study.   International Journal of Palliative Nursing, 23 (2) P 88 - 97.

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