Children’s Palliative Care Resources/ Papers

There are a wide range of resources available around the world on children’s palliative care. Here we signpost you to some of them, although there are a lot more available both in English and in other languages:

Books on CPC

2021 – The Oxford Textbook of PC for Children – 3rd Edition (Hain R, Goldman A, Rapoport A and Meiring M. Oxford University Press)

This book is being sold on a range of websites including Oxford University Press and can be purchased as an online edition or in print.

It:

  • Identifies the medical, psychological, practical, and spiritual issues of caring for terminally ill children and their families
  • Promotes a model of care that addresses the complex and multifaceted needs of children with life-threatening illnesses and their families
  • Includes two new chapters looking in detail at ‘Decision Making’ and ‘Perinatal Care’ and a new section highlighting the emerging importance of ‘Palliative Care for Children in Humanitarian Crises’
  • Has a new section providing the voices of two parents telling their stories, offering thoughtful recommendations to clinicians
  • Is an Award Winner in the Paediatrics Category at the BMA Medicine Book Awards

2021 – Medicine Palliative chez les enfants et adolescents (Asrudilo W, et al (Eds.) Paliativos Sin Fronteras)

Ce livre de Palliatifs Sans Frontière (PSF), une ONG sanitaire internationale de palliatifs, a trois objectifs : améliorer l’attention qui est donnée aux enfants et aux adolescents dans des conditions qui menacent ou limitent leur vie ; soutenir leurs familles pendant la maladie et dans la phase du deuil et promouvoir la solidarité oncologique et palliative pédiatrique avec les pays de moins de ressources. Il représente un effort international de 92 auteurs, beaucoup d’entre eux des professeurs universitaires y des pédiatres palliatifs, afin de trouver des manières de satisfaire les besoins des enfants et des familles en ces circonstances. Ses 59 chapitres se distribuent en 10 sections qui traitent les bases de SPP, la gestion des symptômes, le cancer des enfants et des adolescents, les SP dans d’autres situations, le soulagement de la souffrance, l’attention à la famille, aux nécessités psycho-sociales, le travail d’équipe et les professionnels, la coopération en oncologie et palliatifs, et la bioéthique et les droits des enfants dans des situations qui mettent en danger ou limitent leur existence.

Pour plus d’informations, cliquez ici

2020 – Medicina Palliative en Ninos y Adolescentes. (Asrudilo et al. (Eds.) Paliativos Sin Fronteras)

Paliativos Sin Fronteras considera que este libro puede ser un instrumento muy eficaz para proporcionar un mayor bienestar de los niños y adolescentes, reducir su sufrimiento y acrecentar el apoyo social a sus familias. Por estos motivos, trabaja por la cooperación internacional con países de recursos reducidos a través de la formación de profesionales en paliativos y dolor y el apoyo a la creación y mantenimiento de estructuras en estos campos.

Para más información, pulse aquí

2020 – Children’s Palliative Care: An International Case-Based Manual (Downing (Eds) Springer)

This book is being sold on a range of websites including Springer and can be purchased as an ebook or in print.

 

This manual, edited by ICPCN enables individuals working in children’s palliative care globally to learn through engaging real-world cases. The aim is to provide a clinical case-based resource that is globally relevant and accessible to those working in CPC.  Drawing on case histories from around the world that reflect key issues and elements of CPC, it provides a practical approach grounded in experience. It addresses multidisciplinary care in the management of children and their families; discusses cases from an international perspective, and shares examples from a variety of countries, utilising cases across a range of ages and conditions, demonstrating holistic care. It represents the first case-based manual on global CPC and is endorsed and promoted by the International Children’s Palliative Care Network (ICPCN).

2016 – A really practical handbook of children’s palliative care (Amery J Eds)

Download here (English)

Download here (Greek)

在此下载(中文)

 

PLEASE NOTE: This book is made freely available by the author in order to improve the provision of Children’s Palliative Care around the world.  Please feel free to download it, copy it and send it to as many of your colleagues as you’d like.  However, please do not amend the content in any way.

 

If you would like to translate this book into a different language please contact ICPCN at admin@icpcn.org

 

A review of the book by Hannah TearleSenior Sister, Children’s Inpatient Unit,
Keech Hospice Care

The title of this book sums up its contents well. The book is made up of two parts. The first part is Dr Amery’s handbook and the second part is the Association of Paediatric Palliative Medicine Formulary (2015). Together this could be considered the bible of paediatric palliative care.

 

The format of the book has been designed so that it is easy to use and the informal writing style makes it easy for anybody to read and understand. Dr Amery’s handbook is split into 15 sections which cover all of the problems commonly faced by health care professionals when caring for children who are dying. Each section is then broken down further to give step by step instructions.

 

The book is derived from Dr Amery’s empirical research and twenty years experience along with other international contributors along with the available evidence. There is very little research carried out in the field of paediatric palliative care worldwide compared to other areas of medicine. It is a niche subject so bringing these specialists wealth of knowledge and experience together makes it an invaluable resource.

 

This handbook addresses communication, breaking bad news, playing, to symptom managing and self care. Each chapter has a title How do I… Using chapter six “How do I manage symptoms in children’s palliative care?” as an example will illustrate the format for the whole book as each chapter is structured in the same way.

 

Part six is the largest chapter, but is still broken down simply to give the answers to any question you may have regarding symptom management. It starts by stating what may already be known and then it moves onto the section with information that may be useful. The first symptom described is pain. Different ways of assessing pain is explored first referring to WHO (2013) Then it moves onto non pharmacological and pharmacological management of pain, the use of opioids and the different types of pain. The chapter carries on the same logical format discussing all other symptoms that may need managing such as seizures, vomiting and anxiety to name a few.

 

This handbook has been written for any health care professional across the world. Dr Amery has taken culture and different socioeconomic backgrounds into consideration. The handbook will soon become an indispensable tool for all healthcare professionals within the field of children’s palliative care.

2009 – Children’s Palliative Care in Africa (Amery J (Ed) Oxford University Press)

This textbook is being sold through the Oxford University Press, and you can also download it for free as a pdf here as we want to see children’s palliative care develop worldwide.

 

Children’s Palliative Care in Africa is a textbook that responds to the enormous and growing need for children’s palliative care services in Africa and other resource-poor settings. This comprehensive textbook was the first to be written by practitioners working in Africa, specifically to meet the palliative care needs of children. It provides practical guidance by improving access to, and delivery of, palliative care in this demanding setting. Written by a group with wide experience of caring for children with life-limiting illnesses in Africa, and edited by Dr. Justin Amery, the textbook addresses key palliative care themes, which are crucial to expanding the provision of children’s palliative care.

The book is particularly suitable for:

  • Those working with children with HIV/AIDS (for whom palliative care should be an essential part of treatment);
  • Those working in the adult palliative care sector (many of whom also care for children);
  • Those working in other paediatric and child health specialities.

While the book is primarily aimed at health and social care professionals, and is written with sufficient depth to be of use to specialists, its style is accessible for a range of other people concerned and involved in the care and treatment of children with life-limiting illnesses

Additional Resources

Clinical Care Resources

Safe use of medicines (3rd Edition) Together for Short Lives 2021
A guide to children’s palliative care Together for Short Lives  2018
APPM Master Formulary (5th Edition) Association of Paediatric Palliative Medicine and Together for Short Lives  2020
Basic Symptom Control in Paediatric Palliative Care (10th Edition) Association of Paediatric Palliative Medicine and Together for Short Lives 2022
Caring for a child at end of life – a guide for professionals on the care of children and young people Together for Short Lives 2019
Pain assessment and treatment in children with significant impairment of the central nervous system American Academy of Paediatrics 2017
The Starship Guidelines on Seizure Management at the End of Life Starship, New Zealand 2022
Management of Seizures in children and young people in the palliative care setting Association of Paediatric Palliative Medicine 2023
Ugandan CPC Clinical Protocols PcERC 2020

Perceptions of CPC

Education and Competencies

Increasing Access to Care: Designing a Blended Curriculum to Educate Adult Hospice Nurses in Caring for Pediatric Patients. 2024
Lynch-Godrei A, et al. (2024)  An Online Pediatric Palliative Care Education and Mentoring (Project ECHO) in Nepal: A Program Implementation Case Study and Assessment of Changes in Healthcare Providers’ Knowledge, Confidence, and Attitudes Journal of Medical Education and Curricula Development 11,1-12. 2024
Neilsen S, Randall D, McNamara K, Downing J. (2021) Children’s palliative care education and training: developing an education standard framework and audit. BMC Med Educ 21:539. 2021
Downing J, Ling J, Benini F, Payne S, and Papadatou D. (2013) EAPC core competencies for education in paediatric palliative care. Report of the EAPC children’s palliative care education task force. EAPC, Italy. 2013
Downing J, Ling J, Benini F, Payne S and Papadatou D. (2014) A summary of the EAPC White Paper on core competencies for education in paediatric palliative care. European Journal of Palliative Care. 21(5): 245-249. 2014
Ghoshal A, Talawadekar P, Palleri A, Marston J, Muckaden M. (2018). Impact of educational training in improving skills, practice, attitudes and knowledge of healthcare workers in pediatric palliative care: Children’s palliative care project in the Indian State of Maharashtra.Indian Journal of Palliative Care. 24(4): 411-425. 2018

Outcome Measurement

Ang FJL et al. Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure. BMC Palliative Care 2024
Coombes L Haroardottir S, Braybrook D, Roach A, Scott H, Bristowe K, Ellis-Smith C, Downing J,

Bluebond-Langner M, Fraser LK, Murtagh FEM, Harding R. (2023) Design and Administration of Patient-Centered Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life Threatening Conditions and their Family Members. The Patient-Patient-Centered Outcomes Research. Published online 23 May 2023
2022
Namisango E, Bristowe K, Murtagh FEM, Downing J,  Richard A Powell RA, Atieno M, Abas M, Ali Z,  Luyirika EBK, Meiring M, Mwangi-Powell FNM, Higginson IJH, and Harding R. (2022) Face and content validity, acceptability, feasibility and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries. Palliative Medicine. 36(7): 1140-1153.
Coombes L, Bristowe K, Ellis-Smith C, Aworinde J, Fraser LK, Downing J, Bluebond-Langner M, Chambers L, Murtagh FEM, Harding R. (2021) Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Quality of Life Research. 30:1803-1832 2021
Friedel M,  Brichard B, Boonen S, Tonon C, De Terwangne B, Bellis D, Mevisse M, Fonteyne C, Jaspard M, Schruse M, Harding R, Downing J, Namisango E, Degryse JM, Aujoulat I. (2021) Face and content validity, acceptability and feasibility of the adapted version of the Children’s Palliative Outcome Scale: A Qualitative Pilot Study, Journal of Palliative Medicine 24(2):181-188. 2021
Namisango E, Bristowe K, Murtagh FE, Downing J, Powell RA, Abas M, Haufiku D, Guma S, Luyirika EBK, Mwangi-Powell FN, Higginson IJ, Harding R. (2020). Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study. Palliative Medicine 34(3):319-335. 2020
Namisango E, Bristowe K, Allsop MJ, Murtagh FEM, Abas M, Higginson IJ, Downing J, Harding R. (2019) Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. The Patient-Patient Centered Outcomes Research 12:15-55. 2019
Downing J, Namisango E, Harding R (Annals of Palliative Medicine 2018)
Outcome measurement in paediatric palliative care: lessons from the past and future developments Annals of Palliative Medicine 7(Suppl 3):S151-S163
2018
Bausewein C, Daveson BA, Currow DC, Downing J, Delians L, Radbruch L, Defilippi K, Lopes Ferreira P, Costanini M, Harding R and Higginso IJ. (2015) EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliative Medicine30(1):6-22. 2015
Downing J, Atieno M, Powell RA, Ali Z, Marston J, Meiring M, Ssengooba J, Williams S, Mwangi-Powell FN, Harding R and the APCA AIDSTAR Project Advisory Group. (2012) Development of a palliative care outcome measure for children in sub-Saharan Africa: findings from early phase instrument developmentEuropean Journal of Palliative Care. 19(6) 292-295  2012

Advanced Care Planning

Parental perspectives on end-of-life care in the pediatric intensive care unit 2002
Characteristics of deaths occurring in hospitalised children: changing trends 2007
Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions 2019
Advanced Care Planning: Thinking Ahead
Serious illness conversations in pediatrics: a case review 2020
Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review 2021
Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals 2021
Development of a stakeholder driven serious illness communication program for advance care planning in children, adolescents, and young adults with serious illness 2021
Decision-making approaches for children with life-limiting conditions: results from a qualitative phenomenological study 2022
Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia 2022
Initiation of Paediatric Advance Care Planning: Cross Sectional Survey of Health professionals reported behaviour 2022
Parents’ experiences of initiation of paediatric advance care planning discussions: a qualitative study 2022
Advance Care Planning Policy 2022
2022
2023
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2023

Special issue on Advance Care Planning – General not Paediatric Specific and from across the world

2023
IMPACT: Putting Advance Care Planning into practice (kinderpalliatief.nl)

 

Neonatal Palliative Care

Lin M et al. Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria. 2024
Association of Women’s Health, Obstetric and Neonatal Nurses position statement on the importance of perinatal palliative care​ 2023
Bertaud S et al. Specialist perinatal palliative care: a retrospective review of antenatal referrals to a childrens palliative care service over 14 years. 2023
Côté-Arsenault D. The case for perinatal palliative care and expanded research 2023
Leuthner SR and Cortezzo DE.  Editorial: Advances in neonatal-perinatal palliative care ​. 2023
McCarthy FT et al. Perinatal palliative care: focus on comfort 2023
Silveira AO et al. Parents’ hope in perinatal and neonatal palliative care: a scoping review 2023
Tewani K et al. Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study. 2023
Tatterton MJ, Fisher MJ et al. “Holding Families in Uncertainty”: A Framework Analysis of the Role and Impact of Children’s Hospices in the Provision of Perinatal Palliative Care 2023
Tatterton MJ and Fisher MJ. ‘You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end’: A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition. 2023
Boutillier, B et a.  Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation. 2023
Clarke P et al. Delivery room cuddles for extremely preterm babies and parents: concept, practice, safety, parental feedback. Acta Paediatrica. 2022
Marlow N et al. End-of-life decisions in neonatal care: a conversation analytical study. Arch Dis Child Fetel Neonatal. Ed. 2020
BAPM. Perinatal Management of Extreme preterm Birth before 27 weeks of gestation. 2019
Together for Short lives. A Perinatal Pathway for Babies with Palliative Care Needs. 2017
National Association of Neonatal Nurses. Palliative and End-of-life Care for Newborns and Infants. Position Statement 2015
Laddie J et al. Withdrawal of ventilatory support outside the intensive care unit: guidance for practice. Arch Dis Child. 2014

Experiences of children and their families

 

Miquel et al. Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study 2024
Abdulla S et al. Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis 2023
Neefjes, V.  Metaphors and decision making in parental blogs about their children with life-limiting diseases: Who’s afraid of the war metaphor? 2023
Sjuls, M et al.  Fathers’ experiences of living with a child with a progressive life-limiting condition without curative treatment options: A qualitative systematic review. 2023
Nogueira, AJ & Ribeiro, MT. “I’m Afraid If This Goes Wrong… What Will Become of Me?”: The Psychological Experience of Grandparents in Pediatric Palliative Care. 2023
Dinkelbach, L et al. Psychosocial well-being of siblings of pediatric patients in palliative home care. 2023
Milbrath, V. M et al. Vulnerabilities experienced by family members/caregivers of children with chronic conditions 2023
Mukherjee et al. Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: Scoping reviews and resultant conceptual frameworks. BMC Pediatrics. 2023
Engel et al. The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review’ Palliative Medicine. 2023
Ananth, P et al Parent Priorities in End-of-Life Care for Children With Cancer. 2023
Rassam, RS. et al. Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer. 2023
Freitag, VL  et al. “He is normal”: Phenomenological considerations of child/adolescent’s perception of the disabled sibling. 2022
Alaqeel, M et al.  Depression and Quality of Life Among Caregivers of Pediatric Cancer Patients. 2022
Ananth, P et al. A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children With Cancer. 2021
Ogourtsova, T et al. Fathers Matter: Enhancing Healthcare Experiences Among Fathers of Children with Developmental Disabilities. Frontiers in Rehabilitation Sciences, 2. 2021
Nguyen, L et al. Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: Protocol of a scoping review. 2021
Postavaru, GI et al.  A meta-ethnographic study of fathers’ experiences of caring for a child with a life-limiting illness. 2020
Weaver-Hightower, MB. Losing Thomas & Ella: A Father’s Story (A Research Comic). 2017
Fullerton, JM et al.  Siblings of children with life‐limiting conditions: Psychological adjustment and sibling relationships. 2017
Stephenson, E et al.  Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems. 2017

Digital Health Technology

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2020
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2018
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2021

Award TF et al. Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer

2020
Steineck A et al. Seeking virtual support: Digital technology use in adolescent and young adults with advanced cancer 2022
2018
2019
2019
2016
2020

Allsop MJ, Powell RA and Namisango E. The state of mHealth development and use by palliative care services in sub-Saharan Africa: a systematic review of the literature

2015

Allsop MJ, Namisango E and Powell RA. A survey of mobile phone use in the provision of palliative care services in the African region and priorities for future development

2019

Griffee K et al. A Systematic Review of Digital Interventions to Improve ART Adherence among Youth Living with HIV in sub-Saharan Africa

2022
Institute of Global Health Innovation. The children’s palliative care provider of the future: A blueprint to spark, scale and share innovation 2022

CPC Podcasts

“The Sunflower” Palliative Care Podcasts.

  • The Sunflower is a podcast that explores global pediatric palliative care, exploring new issues and engaging on questions about caring for children with serious illnesses and their families, through a global lens.
  • The series brings curiosity, humor, and reflection to the world of palliative care.
  • Offering discussions on the joys and challenges of palliative care, including topics related to education, advocacy, self-care and leadershipfrom around the world.
  • Finding Beauty and Joy in Children’s Palliative Care
  • Breath in and out, bring respirology and palliative care together

CPC and Covid

Bustamante LM, Okhuysen-Cawley R, Downing J, Connor SR, Muckaden MR, Phillips M, Icaza A, Garzon N, Nakashima Y, Morgan K, Mauser S and Grunauer M. (2022). The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care. Children 9:642 2022
McNeil MJ, Kaye EC, Vedaraju Y, Baker JN, Devidas M, Downing J, Graetz D, Ranadive R, Rosenberg AR, Wiener L and Weaver MS. (2021) Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic. Journal of Pain and Symptom Management. 62(3) e91-99. 2021
ICPCN, WHPCA, IAHPC. Palliative care, COVID-19 and Universal Health Coverage Report 2020
Rossi et al. ‘Palliative care during the pandemic: Being human and facing finitude,’ Revista Bioética.

English Spanish Portuguese

2023

 

We try to add new resources/ papers on an ongoing basis – please do let us know if you have any resources/ papers that you think should be added.

The International Association of Hospice and Palliative Care (IAHPC) publish a literature search on a regular basis and literature search #5 can be found here.

Palliaped is also a new resource with regards to CPC