Browse Items · Pediatric Palliative Care Library

The purpose of an individual care plan in pediatric palliative care according to healthcare professionals: a qualitative study

Background: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual…

Factors Associated With Palliative Care Birth Planning at a Pediatric Hospital

OBJECTIVE: To identify factors associated with the receipt, completion, and goals of palliative care birth plans during the prenatal period. DESIGN: Retrospective observational study of medical record data. SETTING: Midwestern U.S. quaternary…

Including Goals of Care in Treatment Decisions—Meeting Them Where They Are Involves Moving

Asking about the guiding goal of care (GOC) offers health care professionals a perspective on how an individual patient or a family prioritizes health care decisions and is an essential component of shared-decision making. Listening to the patient…

Tags: 2023, Chronic Disease\, Conversation\, Critical Illness\, Decision Making Shared\, Family\, Goals and Objectives\, Health Personnel\, Health Priorities\, Health Status\, JAMA Pediatrics\'a0, Linebarger JS, October List 2025, Palliative Care\, Parents\, Patient Care Planning, Pediatric Care\, Quality of Life\

Goals of Care Among Parents of Children Receiving Palliative Care

Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known.…

Pediatric Goals of Care Communication: A Socioecological Model to Guide Conversations

The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics…

Tags: 2023, Advance Directives, Child, Communication, Docherty S, Grier K, Human, Journal of Hospice and Palliative Care, Koch A, March List 2023, Palliative Care, Parents, Patient Care Planning, Quality Of Life, United States

Sharing the care: the key-working experiences of professionals and the parents of life-limited children

AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…

Health care transition: youth, family, and provider perspectives

OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care…

Evaluation of patient-care protocol use by various providers

Pediatric extubation: "pulling the tube"

Crisis intervention strategies when caring for families of children with cancer

A diagnosis of childhood cancer is an unexpected life event that often precipitates a situational crisis for all family members. Required cancer treatments and other ongoing stressors for both child and family will significantly disrupt the family's…

Tags: 2000, Adult, Backlog, Child, Crisis Intervention/methods, Family/psychology, Hendricks-Ferguson VL, Humans, Intervention, Interventions, Journal Article, Journal Of Pediatric Oncology Nursing, Neoplasms/nursing/psychology, Nursing Assessment/methods, Parent caregivers, Patient Care Planning, Professional-family Relations

Advance care planning in adolescents with cystic fibrosis: A quality improvement project

INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider…

Guidance on forgoing life-sustaining medical treatment

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the…

Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL

Palliative Care

Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev…

Tags: 103-90-2 (paracetamol), 1095-90-5 (methadone), 125-56-4 (methadone), 12794-10-4 (benzodiazepine), 137-58-6 (lidocaine), 2017, 23142-53-2 (methadone), 24847-67-4 (lidocaine), 297-88-1 (methadone), 437-38-7 (fentanyl), 53663-61-9 (opiate), 56934-02-2 (lidocaine), 60142-96-3 (gabapentin), 73-78-9 (lidocaine), 76-99-3 (methadone), 8002-76-4 (opiate), 8008-60-4 (opiate), Acute Stress Disorder, Alcohol Consumption, Anticonvulsive Agent, Appetite, Benzodiazepine, Brill P, Connelly E, Corticosteroid, Distress Syndrome, Dyspnea, Fentanyl, Gabapentin, Hair Loss, Health Care Personnel, Health Care System, Hospital, Howk T, Human, Intensive Care Unit, Lidocaine, Major Depression, Medical Staff, Methadone, Mortality, Nausea And Vomiting, Neoplasm, November 2017 List, Obesity, Opiate, Palliative Therapy, Paracetamol, Paralysis, Patient Care Planning, Pediatric Oncology, Pillai R, Postovsky S, Priority Journal, Prostaglandin/ec [endogenous Compound], Quality Of Life, Tracheostomy, Wasilewski-Masker K, Wrammert KC

Early Introduction Of Palliative Care And Advanced Care Planning For Children With Complex Chronic Medical Conditions: A Pilot Study.

BACKGROUND:
Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study…

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