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Pediatric palliative care

Guest Editors:
Laure Dombrecht: End-of-Life Care Research Group, Belgium
Ana Lacerda: Portuguese Institute of Oncology of Lisbon, Portugal
Jennifer Snaman: Dana-Farber Cancer Institute, United States
Joanne Wolfe: Massachusetts General Hospital, United States

BMC Palliative Care has published this Collection describing existing gaps and achievements in pediatric palliative care.

Meet the Guest Editors

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Laure Dombrecht: End-of-Life Care Research Group, Belgium

Laure Dombrecht is an experimental psychologist and obtained a double doctorate in Health Sciences (Ghent University) and Social Health Sciences (VUB) in 2020. In October 2015, she joined the End-of-Life Care Research group. Her research projects focus on end-of-life decisions, end-of-life care, and palliative care in the perinatal period. She has experience conducting and analyzing various methodologies, including qualitative interviews, focus groups, cross-sectional surveys, population-based studies, systematic reviews, and developing complex interventions.

Ana Lacerda: Portuguese Institute of Oncology of Lisbon, Portugal

Dr. Lacerda graduated from Lisbon University Medical School and completed a pediatric residency at NYU Medical Center in 1995; and at Santa Maria Hospital in 1996. Since 1997 she has worked in pediatric oncology, founding Portugal’s first pediatric palliative care (PPC) hospital program in 2005. In 2012-2013 she studied for an MSc degree in PC at KCL / Cicely Saunders Institute, receiving the Dame Cicely Saunders Prize for Academic Excellence. In 2013 she founded and, to date, chairs the PPC Taskforces at the Portuguese Association of Palliative Care and the Portuguese Paediatric Society. Since 2015 Dr. Lacerda has been Assistant Professor at Nova Medical School, where she teaches a PPC Unit to 5th-year students. She is a founding member of the Portuguese Observatory of Palliative Care (2016) and a member of the EAPC Children and Young People Reference Group, which she currently chairs.  She is the founder and inaugural chair of the PC Working Group of SIOP Europe.

Jennifer Snaman: Dana-Farber Cancer Institute, United States

Jennifer Snaman is an Attending Physician in the Department of Psychosocial Oncology and Palliative Care and in the Department of Pediatric Oncology at Dana-Farber Cancer Institute. She completed her Pediatrics residency at the Boston Children’s Combined Residency Program and a combined fellowship in Palliative Care and Pediatric Oncology at St. Jude Children’s Research Hospital in Memphis, TN. Her research aims to augment the voice of adolescents and young adults with advanced cancer in treatment decision-making and to improve the understanding of the early bereavement experience of parents following the death of a child from cancer.

Joanne Wolfe: Massachusetts General Hospital, United States

Joanne Wolfe, MD MPH, is the Chair of Pediatrics at Mass General for Children. She previously served as the Division of Pediatric Palliative Care in the Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute and as the Director of Palliative Care at Boston Children’s Hospital (BCH) for nearly 30 years. She is a Professor of Pediatrics at Harvard Medical School.  She holds an MD degree (1990) from Harvard Medical School and an MPH (1998) from the Harvard School of Public Health. Dr. Wolfe’s research is focused on easing suffering and promoting well-being in children with serious illness and their families. She also co-directs the multinational Pediatric Palliative Care Research Network.

About the collection

BMC Palliative Care has published this Collection describing existing gaps and achievements in pediatric palliative care. Pediatric palliative care is an emerging subspecialty focusing on the enhancement of quality of life for the child and support for the whole family, from diagnosis throughout the disease trajectory to death and bereavement. According to the World Health Organization, the number of children – neonates, infants, children, and adolescents up to 19 years of age – who need pediatric palliative care each year may be as high as 21 million, and access to palliative care for children has been defined as an “ethical responsibility of health systems.” It includes the management of distressing symptoms, spiritual and psychosocial issues, and the provision of respite care. 

In recognition of this relevant field, BMC Palliative Care has published this Collection which encouraged submissions including but not limited to those addressing:
●    Advances in pharmacological and non-pharmacological symptom management 
●    Improvement in shared decision-making and Advance care planning
●    Bereavement care
●    Education and training in pediatric palliative care across disciplines and specialties
●    Support measures to reduce the emotional and psycho-social distress for parents, family members, and involved healthcare professionals
●    Interventions to improve the well-being of the entire family
●    Pediatric palliative care integration within the healthcare systems
●    Barriers and facilitators to pediatric palliative care
●    Perinatal and Neonatal palliative care
●    Practice of palliative sedation 

Image credit: © Africa Studio /

  1. In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support t...

    Authors: Judith Schröder, Kirsti Riiser and Heidi Holmen
    Citation: BMC Palliative Care 2024 23:137
  2. Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of spec...

    Authors: Cho Hee Kim, Jung Lee, Ji Weon Lee and Min Sun Kim
    Citation: BMC Palliative Care 2024 23:127
  3. To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future resear...

    Authors: Anette Winger, Heidi Holmen, Dröfn Birgisdóttir, Camilla Lykke, Malin Lövgren, Mette Asbjoern Neergaard, Marika Grönroos, Johanna Kero, Oddný Kristinsdóttir, Ásta Bjarney Pétursdóttir and Charlotte Castor
    Citation: BMC Palliative Care 2024 23:118
  4. As pediatricians play a vital role in pediatric palliative care (PPC), understanding their perspectives toward PPC is important. PPC is established for a long time in Belgium, but has a shorter tradition in Ch...

    Authors: Yajing Zhong, Alice Cavolo, Veerle Labarque, Bernadette Dierckx de Casterlé and Chris Gastmans
    Citation: BMC Palliative Care 2024 23:106
  5. Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child’s QoL, less is known about parents’ ...

    Authors: Trine Brun Kittelsen, Vibeke Bruun Lorentsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme and Anette Winger
    Citation: BMC Palliative Care 2024 23:92
  6. Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distr...

    Authors: Kim C. van Teunenbroek, Renée L. Mulder, Inge M. L. Ahout, Karen G. C. B. Bindels-de Heus, Catharina M. Delsman-van Gelder, Annemie F. S. Galimont-Collen, Marinka A. R. de Groot, Katja M. J. Heitink-Polle, Jeffry Looijestijn, Maarten O. Mensink, Selma Mulder, Jolanda H. Schieving, Antoinette Y. N. Schouten-van Meeteren, Johannes M. A. Verheijden, Hester Rippen, Brigitt C. M. Borggreve…
    Citation: BMC Palliative Care 2024 23:72
  7. Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness ...

    Authors: Felicia Jia Ler Ang, Mihir Gandhi, Truls Ostbye, Chetna Malhotra, Rahul Malhotra, Poh Heng Chong, Zubair Amin, Cristelle Chu-Tian Chow, Teresa Shu Zhen Tan, Komal Tewani and Eric Andrew Finkelstein
    Citation: BMC Palliative Care 2024 23:66
  8. Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is cons...

    Authors: Larissa Alice Kubek, Benedikt Claus, Boris Zernikow and Julia Wager
    Citation: BMC Palliative Care 2024 23:52
  9. In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Insti...

    Authors: María Isabel Cuervo-Suarez, Daniela Cleves, Natalia Duque-Nieto, Angélica Claros-Hulbert, Karen Molina-Gómez, Jhon Edwar Bolaños-Lopez, María Elena Tello-Cajiao, Justin N Baker, Michael J. McNeil and Ximena García-Quintero
    Citation: BMC Palliative Care 2024 23:31
  10. The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a...

    Authors: Aline Oliveira Silveira, Monika Wernet, Larissa Fernandes Franco, Patrícia Luciana Moreira Dias and Zaida Charepe
    Citation: BMC Palliative Care 2023 22:202
  11. Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. St...

    Authors: Kim C. van Teunenbroek, Leontien C. M. Kremer, A. A. Eduard Verhagen, Johannes M. A. Verheijden, Hester Rippen, Brigitt C. M. Borggreve, Erna M. C. Michiels and Renée L. Mulder
    Citation: BMC Palliative Care 2023 22:193
  12. Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. ...

    Authors: Siyu Cai, Lei Cheng, Ruixin Wang, Xuan Zhou and Xiaoxia Peng
    Citation: BMC Palliative Care 2023 22:190

    The Correction to this article has been published in BMC Palliative Care 2024 23:23

  13. Perinatal palliative care is an emerging branch of children’s palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care ...

    Authors: Sophie Bertaud, Georgina Brightley, Nicola Crowley, Finella Craig and Dominic Wilkinson
    Citation: BMC Palliative Care 2023 22:177
  14. Effective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Se...

    Authors: Lucie Hrdlickova, Kristyna Polakova and Martin Loucka
    Citation: BMC Palliative Care 2023 22:152
  15. Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-rep...

    Authors: Heidi Holmen, Anette Winger, Simen A. Steindal, Kirsti Riiser, Charlotte Castor, Lisbeth Gravdal Kvarme, Kari L. Mariussen and Anja Lee
    Citation: BMC Palliative Care 2023 22:148
  16. Paediatric palliative care is needed now more than ever. Medical and technological advances mean that children with complex chronic conditions are surviving longer, necessitating longitudinal support from comm...

    Authors: Laure Dombrecht, Ana Lacerda, Joanne Wolfe and Jennifer Snaman
    Citation: BMC Palliative Care 2023 22:141

Submission Guidelines

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This Collection welcomes the submission of Research Articles. Should you wish to submit a different article type, please read our submission guidelines to confirm that type is accepted by the journal. Articles for this Collection should be submitted via our submission system, Snapp. During the submission process you will be asked whether you are submitting to a Collection, please select "Pediatric palliative care" from the dropdown menu.

Articles will undergo the journal’s standard peer-review process and are subject to all of the journal’s standard policies. Articles will be added to the Collection as they are published.

The Guest Editors have no competing interests with the submissions which they handle through the peer review process. The peer review of any submissions for which the Guest Editors have competing interests is handled by another Editorial Board Member who has no competing interests.