Article
Pediatrics
Charlotte Wool, Elvira Parravicini
Summary: This study aims to measure the implementation of quality indicators of Perinatal/Neonatal Palliative Care as reported by participants after a one-year training course. The results show a high frequency of QIs implementation by professionals who attended the training course, with colleagues implementing palliative care practices less frequently. Attending evidence-based education can increase clinicians' opportunities to translate quality PNPC care into clinical settings.
FRONTIERS IN PEDIATRICS
(2021)
Article
Psychology, Multidisciplinary
Astrid Schnabel, Florian Lordick, Paula Oberth, Markus Neuschulz, Antje Lehmann-Laue, Anja Mehnert-Theuerkauf, Andreas Hinz
Summary: This study analyzed the relationship between supportive care needs (SCNs), satisfaction with quality of life (QoL) dimensions, and the perceived importance of these dimensions among 152 cancer patients receiving palliative care. The results showed that the greatest SCNs were observed for absence of pain, while the patients were least satisfied with their physical functioning and the dimension social relationships received the highest perceived importance ratings.
FRONTIERS IN PSYCHOLOGY
(2023)
Article
Pediatrics
F. T. Mccarthy, A. Kenis, E. Parravicini
Summary: This manuscript presents guidelines and essential tools/strategies from the Neonatal Comfort Care Program at Columbia University Irving Medical Center, based on 15 years of experience, on providing care for families during the perinatal journey.
FRONTIERS IN PEDIATRICS
(2023)
Article
Pediatrics
Marco Bolognani, Paola Daniela Morelli, Isabella Scolari, Cristina Dolci, Valentina Fiorito, Francesca Uez, Silvia Graziani, Barbara Stefani, Francesca Zeni, Gino Gobber, Elena Bravi, Saverio Tateo, Massimo Soffiati
Summary: This study describes a model of perinatal palliative care for fetuses and newborns in an Italian level II perinatal center. The program provides structured care for eligible infants and their families, from diagnosis to bereavement, in both outpatient and inpatient settings, despite the limited population and variability in disease trajectories.
FRONTIERS IN PEDIATRICS
(2021)
Review
Pediatrics
Laure Dombrecht, Kenneth Chambaere, Kim Beernaert, Ellen Roets, Mona De Vilder De Keyser, Gaelle De Smet, Kristien Roelens, Filip Cools
Summary: Perinatal palliative care (PPC) provides support to infants, parents, and healthcare providers in cases of severe diagnoses before or after birth. This study conducted a comprehensive review of the effectiveness and components of existing PPC programs, revealing that PPC includes both policy changes and actual care provision directed towards the fetus/infant, the family, healthcare providers, and external actors. However, there is a lack of trials and evidence to determine the actual effectiveness of these components, despite PPC being a growing research field with mainly descriptive studies and guidelines.
Article
Health Care Sciences & Services
Deena R. Levine, Rebecca Epperly, Griffin Collins, Aimee C. Talleur, Belinda Mandrell, Michele Pritchard, Suraj Sarvode Mothi, Chen Li, Zhaohua Lu, Justin N. Baker
Summary: This study aimed to evaluate patient and parent attitudes toward early palliative care (PC) integration in pediatric hematopoietic cell transplantation (HCT). The results showed that the majority of participants believed that quality of life should be prioritized from the start of HCT, and most expressed a positive attitude towards early PC consultation.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2023)
Review
Medicine, General & Internal
M. K. T. N. Motlana, S. E. Makhunga, N. Jafta, T. G. Ginindza
Summary: This scoping review aims to map the available data on the usage of palliative care quality indicators that are relevant to cancer patients in low- and middle-income countries (LMICs). The study will search for evidence on palliative care quality measures applicable for patients living with cancer and aims to improve care across all components of health systems.
SYSTEMATIC REVIEWS
(2023)
Review
Pediatrics
Yiting Wang, Chunjian Shan, Yingying Tian, Congshan Pu, Zhu Zhu
Summary: This bibliometric study analyzed the scientific output and research trends in perinatal palliative care, including 114 relevant publications. The United States has been the major contributor to the field, collaborating closely with researchers from Canada, Portugal, and Australia. The main research topics identified include candidates for PPC, service models, framework components, parental perspectives, and challenges for healthcare providers.
FRONTIERS IN PEDIATRICS
(2022)
Article
Pediatrics
Gitanjli Arora, Menchie Caliboso, Jennifer Baird, Rachel Rusch, Jennifer Greenman, Daniela Obregon, Janet R. Serwint
Summary: Partnering with parents is crucial in pediatric end-of-life care, as identified through focus groups where parents expressed the importance of honoring their role, having confidence in the care team, receiving gestures of love, and navigating challenges. Parents underscored the need for healthcare professionals to anticipate and address financial and social stressors, as well as the importance of a multidisciplinary approach to pediatric EOL care.
Article
Critical Care Medicine
Guido Michels, Manuela Schallenburger, Martin Neukirchen, ICU Palliative Study Grp
Summary: A consensus process is underway in Germany to develop recommendations on palliative care in intensive care for non-oncological patients, aiming to address the needs of patients with advanced diseases.
Article
Surgery
Katherine C. Lee, Anne M. Walling, Steven S. Senglaub, Rachelle Bernacki, Lee A. Fleisher, Marcia M. Russell, Neil S. Wenger, Zara Cooper
Summary: This study aimed to develop a set of quality indicators to measure access to and the quality of primary palliative care (PC) delivered to seriously ill surgical patients. After two rounds of rating by an expert panel, a total of 24 indicators were rated as valid, covering various phases of surgical care.
Article
Medicine, General & Internal
Shuqin Zhu, Hanfei Zhu, Xintong Zhang, Kouying Liu, Zumei Chen, Xiaowen Yang, Changxian Sun, Weiping Xie, Qin Xu, Weiying Li, Dong Pang, Yan Cui, Hong Wang
Summary: The study aimed to investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China. A total of 18 articles were included, identifying that patients need a comfortable experience and family caregivers need to care for patients and themselves.
Article
Medicine, General & Internal
Alexandra Joni Nogueira, Maria Teresa Ribeiro
Summary: This study aims to propose a protocol for assessing the psychological experience of parents in paediatric palliative care in Portugal. Through questionnaires and interviews, the study explores the psychological experience of parents and highlights several important dimensions from an ecosystemic perspective.
ANNALS OF MEDICINE
(2023)
Article
Health Care Sciences & Services
Francesca Rusalen, Maria Elena Cavicchiolo, Paola Lago, Sabrina Salvadori, Franca Benini
Summary: The study team presented a shared care pathway for perinatal palliative care through literature review and discussions in multidisciplinary workgroup meetings, focusing on extremely preterm infants, newborns with life-limiting diseases, and those suitable for transition to PnPC after initial intensive care. The study identified optimal care settings and practices for PnPC, as well as guidelines for family support, corpse management, postmortem counseling, and conflict mediation.
BMJ SUPPORTIVE & PALLIATIVE CARE
(2021)
Review
Obstetrics & Gynecology
Brian S. Carter
Summary: Perinatal palliative care has developed due to the historical necessity of attending to NICU babies with low odds of survival, the increasing use of life-extending but technology-dependent care, and the growth of fetal diagnostic and treatment centers. This review examines the history and ethical justification of providing Pediatric and Perinatal Palliative Care services to families caring for a loved one with life-limiting conditions in both the prenatal and postnatal periods.
SEMINARS IN PERINATOLOGY
(2022)