Embracing paediatric palliative care in paediatric oncology from diagnosis onwards
palliative care; Palliative Care; oncology; early integration; paediatrics; models of care; multidisciplinary care team
Paediatric palliative care aims to support children and young people with life-limiting or life-threatening conditions, and their families, from the time of diagnosis. Early integration within oncology has been recognised as having benefits for all involved, whatever the outcome may be. Through improved communication and advance care planning, it enables user-centred care, where concerns about quality of life, preferences and values are given the same relevance as cutting-edge therapy. Challenges to the integration of palliative care within paediatric oncology include raising awareness and providing education, whilst searching for the best care model and adapting to an ever-changing therapeutic scenario.
Lacerda A; Martínez MA; Dumont B; Leiss U; Kokkinou G; Scheinemann K; Craig F
Pediatric Blood and Cancer
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.30561" target="_blank" rel="noreferrer noopener">10.1002/pbc.30561</a>
Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Palliative Care; Professional-Family Relations; Terminal Care; Communication; Collaboration; Hospitals; Attitude of Health Personnel; Professional-Patient Relations; Health Services Accessibility; Human; Education; Reward; Evaluation; Pediatric Care; PubMed; Communities; Multidisciplinary Care Team; Systematic Review; Multimethod Studies
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative care. Methods: Systematic review of published relevant studies in PubMed and Scopus. The bibliography search took place for articles published from 2017 to 2022. The study included articles on qualitative, quantitative or mixed studies of health professionals in hospitals or in the community that provided pediatric palliative care to people <25 years of age, published from 2015 onwards, exploring their views on palliative care. Results: The results of 15 studies performed on 1,505 health professionals showed that their views focused on the rewards gained and challenges experienced from providing pediatric palliative care, the relationship they develop with the child and family, the collaboration and role of the interdisciplinary team, the role of communication and education, and to the effect of the care on patients and their families as well as on their own personal lives. They identify barriers at individual, team, organizational, hospital, community, and policy level. To address these barriers, they used strategies to support health professionals, patients and families, work and care organization strategies, strategies to improve relationships, communication, education, collaboration and intercultural care. Conclusions: Pediatric palliative care is considered both a reward and a challenge for health professionals but it is obvious that their poor and/or inadequate education and insufficient organization of work and care is in need of improvement in order to provide it effectively.
Anastasopoulou E; Dousis E
International Journal of Caring Sciences
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Palliative care in the neonatal intensive care unit
Health Services Accessibility; Home Health Care; Hospice Care; Intensive Care Units; Multidisciplinary Care Team; Neonatal; Palliative Care; Pediatricians; Perinatal Care; Perinatal Death – Psychosocial Factors; Prenatal Diagnosis; Psychosocial; Support; United Kingdom
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that provides guidance to health professionals. Providing holistic perinatal palliative care depends on close multiprofessional working between the neonatal team and the palliative care professionals who are being integrated into the core neonatal services. Even though most neonates will continue to receive end of life care within the NICU, there are increasing number of families who choose to have end of life care either at home or a hospice. There is a need to develop services across the regions to provide equitable access to excellent clinical care as well as ongoing support to families following loss of a neonate. This short article explores the issues raised in the provision of palliative care in the perinatal period and offers practical guidance for paediatricians in this emerging area.
Jackson C; Vasudevan C
Paediatrics & Child Health
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.paed.2020.01.002" target="_blank" rel="noreferrer noopener">10.1016/j.paed.2020.01.002</a>
A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
BMC Palliative Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</a>
An overview of contemporary social work practice in palliative care.
Female; Male; Palliative Care; Canada; Education; Aged; Social Values; Hospices; Social Work; Patient Advocacy; Role; Research; psychosocial; PPC Book Chapter 2011 (Kim Widger); decision making; knowledge; Support; Adolescence; Collaboration; Evaluation; reflection; Access to Information; 80 and over; Commitment; Communities; Goals and Objectives; Health Care Delivery; Multidisciplinary Care Team; Patient Care Plans
2010
Cadell S; Johnston M; Bosma H; Wainright W
Progress In Palliative Care
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
A Proposed Model for Perinatal Palliative Care
Multidisciplinary Care Team; Palliative Care; Perinatal Loss; Trisomy 13
Perinatal palliative care allows for an active partnership among a pregnant woman, her family, and her multidisciplinary treatment team and addresses her specialized medical care, emotional, social, and familial needs when a life-limiting fetal diagnosis is confirmed. The purpose of this article is to highlight the multidisciplinary care model used within a perinatal palliative care program. A case study provides a unique perspective on support needed for parents who anticipate that their newborn may die before or shortly after birth.
Copyright © 2017 AWHONN, the Association of Women's Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.
Cole JCM; Moldenhauer JS; Jones TR; Shaughnessy E; Zarrin H; Coursey AL; Munson DA
Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1016/j.jogn.2017.01.014" target="_blank" rel="noreferrer">10.1016/j.jogn.2017.01.014</a>