Browse Items · Pediatric Palliative Care Library

Taboo words in pediatric oncology: Communication experiences of nurses and physicians with dying children and their families

Purpose: Despite the numerous benefits of effective communication between patients, families, and healthcare professionals, there are still substantial barriers and communication challenges. This study investigated the experiences of nurses and…

Brazilian Physicians' Attitudes and Feelings Towards Palliative Care in Pediatrics

The aim of the article is to evaluate and understand the feelings and attitudes of Brazilian physicians regarding the implementation of palliative care in pediatric patients. Between July 2018 and December 2019, 236 questionnaires were sent to…

Physician Perceptions of and Barriers to Pediatric Palliative Care for Children with Cancer in Brazil

PURPOSEEarly integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early…

Tags: 2023, 2025 SE2 - LRS, Adult, Agulnik A, Antunes Geronutti Ayub D, Article, Baker JN, Beatriz Costa Neves Do Amaral A, Bereavement, Boldrini E, Brazil, Cancer Palliative Therapy, Child, Childhood Cancer, clinical assessment, Consultation, Cristina Cunha Ferreira EFonseca I, De Oliveira Junior A, Devidas M, emotional support, Esmeraldo Andrade De Almeida A, Female, Francisco Oliveira De Lima A, Friedrich P, Godfrey A, Grief, Health Care Access, health care need, Health Education, Health Survey, Home Care, Human, JCO Global Oncology, Job G, Loggetto P, Lopes Garcia J, Male, McNeil MJ, Medical Expert, Metzger ML, Pediatric Palliative Care, Pediatrics, physical activity, Physician, Physician Attitude, professional knowledge, Qualitative Analysis, Quality Of Life, Regina Costa Murra G, Spiritual Care, World Health Organization

"Who Has the Relationship?": Caring for a Shared Population of Children with Medical Complexity

Background: Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two…

"Death is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication

OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is…

Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions

Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…

Navigating the shadows: medical professionals' values and perspectives on end-of-life care within pediatric intensive care units in Croatia

Background and aim: This study explores healthcare professionals' perspectives on end-of-life care in pediatric intensive care units (ICUs) in Croatia, aiming to illuminate their experiences with such practices, underlying attitudes, and major…

New worlds open up': A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…

Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy

Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve…

Knowledge, attitudes and practices of critical care unit personnel regarding pediatric palliative care: a cross-sectional study

Background: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge,…

Supporting parents while their child is receiving neurocritical care

The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU…

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…

The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review

Background: Families with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we…

Tags: 2024, BMC Health Services Research, Child, Health Care Delivery, Health Care Personnel, Holmen H, Human, March List 2024, Organization, Palliative Care, Palliative Therapy, Physician, Riiser K, Schroder J

Discussing Death as a Possible Outcome of PICU Care

OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected…

Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study

Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured…

Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit

Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest,…

A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers

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. However, to our knowledge, there are…

Palliative Care for Childhood Cancer

Cure rates for children with cancer are improving, but often at the cost of quality of life during treatment [...].

Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses

OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses…

Physicians' attitudes and experiences about withholding/withdrawing life-sustaining treatments in pediatrics: a systematic review of quantitative evidence

BACKGROUND: One of the most important and ethically challenging decisions made for children with life-limiting conditions is withholding/withdrawing life-sustaining treatments (LST). As important (co-)decision-makers in this process, physicians are…

Tags: 2023, Attitudes, Bmc Palliat Care, Cavolo A, Decision-making, Experiences, Gastmans C, Labarque V, November List 2024, Pediatric, Physician, Withhold/withdraw life-sustaining treatments, Zhong Y

Development and Evaluation of a Child Neurology Resident Curriculum for Communication Around Serious Illness

Background: Communication around serious illness is a core competency for all residencies. One-fifth of neurology residencies have no curriculum. Published curricula use didactics or role-play to assess confidence performing this skill without…

"The medicine is the easy part": Pediatric physicians' emotional labor in end-of-life care

Physicians who care for children with life-threatening conditions are uniquely positioned to support families through the dying phase when treatment efforts have failed. Taking on this role for families requires a great deal of time and strategic…

Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations

BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these…

Pediatric palliative medicine in Brazil: an ethical reflection of medical practice

The ethical barriers involved in the practice of pediatric palliative medicine remain high and challenging. In terms of medical ethics, attention should be paid to culture, religion and family values, in order to promote adequate care for caregivers,…

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data

Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…

Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child

Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider…

Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers…

"It's a Heavy Thing to Carry:" Internal Medicine and Pediatric Resident Experiences Caring for Dying Patients

BACKGROUND: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care. OBJECTIVE(S): This…

The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training

OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges…

Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions

Abstract Objective: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. Study design: Based on linked routinely collected databases, we conducted a population-level…

Social Workers in Pediatric Intensive Care Units: A Physician Perspective

Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in…

Challenges in Establishing Optimal Pediatric Palliative Care at the University Hospital in Slovenia

Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…

End of Life Outside of "Business Hours": A Retrospective Review Evaluating Time of Death and Provider Time at End of Life

Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC…

Tags: 2021, advance practice nurse, Brown M, Compassion Fatigue, Friebert S, Grossoehme DH, Hardy-Gomez M, Journal of Palliative Medicine, November 2021 List, Palliative Care, Pediatric, Physician, Strasshofer D

"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer

PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely…

Therapeutic Alliance Between Bereaved Parents and Physicians in the PICU

OBJECTIVES: Therapeutic alliance is the collaborative bond that develops between patients/families and healthcare providers. Our objective is to determine the extent of therapeutic alliance bereaved parents perceive to have occurred with their…

Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU

The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…

Tags: 2018, April 2020 List, Awareness, conference abstract, Controlled Study, Human, Infant, Leadership, Medical Record Review, Needs Assessment, Nguyen L T, Nurse, Palliative Therapy, Patient Referral, Pediatrics, Physician, Practice Guideline, Satisfaction, Spear M L

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