Browse Items · Pediatric Palliative Care Library

Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania

Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of…

Tags: 2021, 2023 SE5 - Low Resource Setting, Adinani H, Adolescent, Adult, antiretroviral therapy, antiretrovirus agent/dt [Drug Therapy], Article, Bacha J, bleomycin/cb [Drug Combination], bleomycin/dt [Drug Therapy], bleomycin/iv [Intravenous Drug Administration], Campbell L, cancer combination chemotherapy, Cancer Palliative Therapy, Cancer Recurrence, Cancer Survival, Child, Children, Cohort Analysis, dexamethasone/dt [Drug Therapy], doxorubicin/cb [Drug Combination], doxorubicin/dt [Drug Therapy], drug contraindication, El-Mallawany NK, Female, Follow Up, Human, Human immunodeficiency virus infection/dt [Drug Therapy], Kaposi sarcoma/dt [Drug Therapy], lack of drug effect, long term survival, Major Clinical Study, Male, Mehta P, multiple cycle treatment, Paclitaxel, paclitaxel/dt [Drug Therapy], Quality Of Life, Retrospective Study, Slone J, Tanzania, treatment duration, Treatment Outcome, Treatment Planning, trend study, vincristine/cb [Drug Combination], vincristine/dt [Drug Therapy], vincristine/iv [Intravenous Drug Administration], virus load, Young Adult

Fathers Matter: Enhancing Healthcare Experiences Among Fathers of Children With Developmental Disabilities

Background: Being a parent of a child with a developmental disability (DD; e. g., cerebral palsy, autism) comes with great challenges and apprehensions. Mothers and fathers of children with DD are experiencing heightened levels of psychological…

Tags: 2021, 2023 SE4 - Parent Perspectives, barriers and facilitators, Bogossian, Aline, children with disabilities, Chung, Derrick, Clinical Practice, family-centered approach, Father, Frontiers in Rehabilitation Sciences, Gavin, Frank, health-care experiences, interactions with health-care professionals., Majnemer, Annette, O'Donnell, Maureen E., Ogourtsova, Tatiana

"They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay

BACKGROUND: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines…

Tags: *Disabled Children, *Intellectual Disability, 2021, 2023 SE4 - Parent Perspectives, Batchelor, Molly, Child, Fathers, Female, Humans, Journal Of Applied Research In Intellectual Disabilities, Maguire, Sabine, Male, Perception, Qualitative Research, Self-Help Groups, Shearn, Julia

Treatment Decision Making and Regret in Parents of Children With Incurable Cancer

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…

Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review

INTRODUCTION: Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and…

Tags: 2021, 2030 SE2 - Parent Perspectives, Adolescent, Bmj Open, Bootsma J, developmental neurology & neurodisability, Di Rezze B, Disabled Persons, education & training (see medical education & training), Gorter JW, Health Personnel, Humans, Jack S, Ketelaar M, Male, Nguyen L, Paediatrics, Review Literature as Topic, Siblings

Coping with cystic fibrosis: An analysis from the sibling's point of view

Abstract Background Cystic fibrosis (CF) is a chronic, life-threatening condition that results in life-long morbidity and premature mortality. CF has a significant impact on healthy siblings' adaptation and well-being. Siblings of patients with a…

Tags: 2021, 2029 SE2 - Parent Perspectives, Child: Care, Health and Development, Chronic Illness, Coping, Cystic Fibrosis, Grounded Theory, Lucidi V, Milo F, psychological adjustment, Ranocchiari S, Siblings, Tabarini P

Current State of Palliative Medical Care for Children at the Regional Level on the Example of the Minsk Region

Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers

Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study…

Optimising the process for conducting scoping reviews

Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be…

Tags: 2021, BMJ Evidence-Based Medicine, Brown HL, Dewan T, Evidence-based Medicine, Grégoire MC, Hermansen AM, Humans, information science, Pawliuk C, Publications, Q3 Scoping Review, Research Design, Siden H, Steele R, Widger K

Efficacy and safety of paediatric medicinal cannabis use: A scoping review

INTRODUCTION: The use of medicinal cannabis in the paediatric age group is increasing despite the lack of evidence for its efficacy or safety. OBJECTIVE: To map the available evidence on the efficacy and safety of medicinal cannabis in children and…

Tags: 2021, Cannabidiol, Cannabis, Chau B, Drug-resistant epilepsy, McKellar T, Medicinal Cannabis, Medicinal marijuana, Paediatrics And Child Health, Pawliuk C, Rassekh SR, Scoping review, Siden H, Tetrahydrocannabinoid

Symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder: a scoping review protocol

OBJECTIVE: The objective of this scoping review is to map and identify the symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder. INTRODUCTION: Autism spectrum disorder is a…

Tags: 2021, Adolescent, Autism spectrum disorder, Child, Delivery of Health Care, Fletcher S, Humans, Ip A, JBI Evidence Synthesis, Medical Marijuana, Medicinal Cannabis, Oberlander T, Parents, Pawliuk C, Review Literature as Topic, Siden H

The Family Liaison : an integral part of our research team (Poster)

Hermansen_A_et_al_Family_liason_poster_2021.pdf

In caring for children with serious illness the clinician’s approach is always family centred. As such our clinical research team has continuously involved families in our studies beyond their role as participants in our research. A Family Advisory…

Tags: 2021, Family Liaison, Hermansen AM, Kim L, Parent Participation, Siden H

A Novel Combined Resilience and Advance Care Planning Intervention for Adolescents and Young Adults with Advanced Cancer: A Feasibility and Acceptability Cohort Study

BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the…

Tags: 2021, 2021 Special Edition - Oncology, Barton KS, Bradford MC, Cancer, Fladeboe KM, Junkins CC, O'Donnell MB, Oncology, Rosenberg AR, Steineck A, Yi-Frazier JP

Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can…

Tags: 2021, 2021 Special Edition - Oncology, Akard TF, Cho E, Friedman DL, Gilmer MJ, Hendricks-Ferguson VL, Hinds PS, Oncology, Progress In Palliative Care

Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer

Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy…

Tags: 2021, 2021 Special Edition - Oncology, Akard TF, Dietrich MS, Friedman DL, Gerhardt CA, Gilmer MJ, Hendricks-Ferguson V, Hinds PS, Journal of Palliative Medicine, Oncology, Rhoten B, Wray S

A Quest for Meaning: A Qualitative Exploration among Children with Advanced Cancer and Their Parents

OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process…

Tags: 2021, 2021 Special Edition - Oncology, Gerhardt CA, Himelhoch AC, Howard Sharp KM, Humphrey L, Kenney AE, Olshefski R, Oncology, Psycho-Oncology, Schaefer MR, Young-Saleme T

Current Status of Intensive End-Of-Life Care in Children with Hematologic Malignancy: A Population-Based Study

BACKGROUND: Adult patients with hematologic malignancies are less likely to receive palliative care and more likely to accept intensive anti-cancer treatments until end-of-life than those with solid tumors, but limited data are available regarding…

Tags: 2021, 2021 Special Edition - Oncology, Blood Transfusion, BMC Palliative Care, Cardiopulmonary Resuscitation, Extra-corporeal membrane oxygenation, Fushimi K, ICU admission, Intravenous chemotherapy, Kato M, Kizawa Y, Matsumoto K, Mechanical Ventilation, Quality Of Life, Shinjo D, Yotani N

An Interprofessional Team-Based Intervention to Address Barriers to Initiating Palliative Care in Pediatric Oncology: A Multiple-Method Evaluation of Feasibility, Acceptability, and Impact

CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the…

Tags: 2021, 2021 Special Edition - Oncology, Carroll KW, codesign, DiDomenico C, Feasibility, Feudtner C, Hill DL, Journal of Pain and Symptom Management, Nye RT, Oncology, Parikh S, Pediatric Palliative Care, Schall TE, Szymczak JE, team cohesion, team collaboration, Walter JK

Paediatric Relapsed Acute Leukaemia: Curative Intent Chemotherapy Improves Quality Of Life

OBJECTIVES: Paediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or…

Tags: 2021, 2021 Special Edition - Oncology, BMJ Supportive and Palliative Care, Fuentes-Alabi S, leukaemia, Paediatrics, Plenert E, Quality Of Life, Salaverria C, Sung L, Supportive Care, Survivorship, symptoms and symptom management, Tomlinson GA, Vasquez R

Children and Adolescent Solid Tumours and High-Intensity End-Of-Life Care: What Can Be Done to Reduce Acute Care Admissions?

Despite improvements in survival, cancer remains the leading cause of non-accidental death in children and adolescents, who risk receiving high-intensity end-of-life (HI-EOL) care. OBJECTIVE: To analyse treatments for relapses (particularly in the…

Parent Values and Preferences Underpinning Treatment Decision Making In Poor Prognosis Childhood Cancer: A Scoping Review Protocol

Introduction Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents' individual values and preferences. Parents of a child who has a poor prognosis…

Tags: 2021, 2021 Special Edition - Oncology, Bmj Open, Darlington ASE, Gibson F, Oncology, Pearson H

Attitudes and Practices of Pediatric Oncologists Regarding Palliative Care Consultation for Pediatric Oncology Patients

Objective: We sought to describe palliative care services available to children with cancer along with pediatric oncologists' current and ideal practices of palliative care involvement in children with cancer. Design(s): A novel survey tool was…

Tags: 2021, 2021 Special Edition - Oncology, Journal Of Pediatric Hematology/oncology, Levy CD, Lewis AM, Oncology, Parisio KN, Schultz CL

MyPal-Child Study Protocol: An Observational Prospective Clinical Feasibility Study of the MyPal ePRO-Based Early Palliative Care Digital System in Paediatric Oncology Patients

INTRODUCTION: Electronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers. Particularly, these children and their families are…

Tags: 2021, 2021 Special Edition - Oncology, Bmj Open, Downing J, Garani-Papadatos T, Graf N, health informatics, Karamanidou C, Ling J, Lokaj P, Maramis C, Meyerheim M, Paediatric oncology, paediatric palliative care, Payne C, Payne S, Sander A, Scarfò L, Stamatopoulos K

Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults with Cancer

Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective(s): To identify priority domains for end-of-life care from the perspectives of AYAs,…

Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives

BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well…

Tags: 2021, 2021 Special Edition - Oncology, Bakitas M, Currie ER, Fisher L, Gilbertson-White S, Gittzus J, Isack A, Journal Of The National Comprehensive Cancer Network, Lindley LC, Mack JW, Martello V, Oncology, Roeland E

Oncologist Conceptualizations of Pediatric Palliative Care: Challenges and Definitions

PURPOSE: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative…

Tags: 2021, 2021 Special Edition - Oncology, Cancer, Feder-Bubis P, Golan H, Granek L, Laronne A, Oncology, Palliative Care, Pediatric Oncology, Qualitative Research, Supportive Care In Cancer, Wiener L

Evaluating Palliative Opportunities in Pediatric Patients with Leukemia and Lymphoma

BACKGROUND: Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care…

Tags: 2021, 2021 Special Edition - Oncology, Allen KE, Brock KE, Cancer Medicine, Castellino SM, DeGroote NP, Ebelhar J, end-of-life, Labudde EJ, Leukemia, Lymphoma, Oncology, palliative opportunity, Pediatric Palliative Care, Smith S, Wasilewski-Masker K

Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer

Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined…

Tags: 2021, 2021 Special Edition - Oncology, Age, Allen KE, Brock KE, Castellino SM, DeGroote NP, Ebelhar J, End Of Life, Journal Of Adolescent And Young Adult Oncology, Labudde EJ, Massie AM, palliative opportunity, Pediatric Palliative Care, Wasilewski-Masker K

End of Life Communication among Caregivers of Children with Cancer: A Qualitative Approach to Understanding Support Desired By Families

OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support…

Tags: 2021, 2021 Special Edition - Oncology, Bedoya SZ, Caregiver, Communication, End Of Life, Gerhardt CA, Kenney AE, Oncology, Palliative & Supportive Care, Pediatric, Wiener L, Young-Saleme T

Communication around Palliative Care Principles and Advance Care Planning Between Oncologists, Children with Advancing Cancer and Families

BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of…

Tags: 2021, 2021 Special Edition - Oncology, Baker JN, Bilbeisi T, British Journal Of Cancer, Gattas M, Huber R, Kaye EC, Kennedy K, Lemmon ME, Mack JW, Oncology, Velrajan S, Woods C

Quality Measures for End-Of-Life Care for Children with Cancer: A Modified Delphi Approach

BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for…

Tags: 2021, 2021 Special Edition - Oncology, Asch SM, Cancer, End-of-life Care, Johnston EE, Martinez I, modified Delphi, Pediatrics, quality measures, Wolfe J

Impact of a Multi-Professional Expert Team on Eol Care of Children with Cancer

BACKGROUND: The quality of end-of-life (Q-EOL) care is influenced by various factors such as resources for palliative care (PC). We introduced a multi-professional expert team (MET) in 2014, which provides home-based care for children and adolescents…

Tags: 2021, 2021 Special Edition - Oncology, Hirayama M, Hori H, Igura C, Iwamoto S, Kawamata A, Komada Y, Matsubara T, Ogura T, Oncology, Pediatrics International, Sakata K, Suefuji M, Yodoya N

Decision-Making in the Era of New Medical Technologies in Pediatric Hematology-Oncology: The Death of Palliative Care?

BACKGROUND: Recent advances in immunology, genomics, and cellular therapy have opened numerous therapeutic possibilities in pediatric hematology-oncology, generating new hope in poor prognosis situations. How decisions are made when it comes to…

Tags: 2021, 2021 Special Edition - Oncology, Duval M, Fortin S, Journal Of Pediatric Hematology/oncology, Le Gall J, Oncology, Payot A, Richer J

Longitudinal Understanding of Prognosis among Adolescents with Cancer

OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative…

Feasibility, Acceptability, and Education of Pediatric Oncology Providers Before and After an Embedded Pediatric Palliative Oncology Clinic

PURPOSE: Most pediatric palliative care (PPC) education is trainee-directed, didactic, or simulation-based and therefore limited in scope, realism, and audience. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated…

Tags: 2021, 2021 Special Edition - Oncology, Allen KE, Brock KE, DeGroote NP, Falk EE, JCO Oncology Practice, Oncology, Wasilewski-Masker K

Relationship Between Household Material Hardship and Distress in Parents of Children with Advanced Cancer: A Report from the PediQUEST Response Trial (T315A)

Objectives: 1. Explain the association between household material hardship and distress in parents of children with advanced cancer. 2. Propose how housing insecurity can be modified for families of children with advanced cancer through providing…

Tags: 2021, 2021 Special Edition - Oncology, Bona K, Dussel V, Eche IJ, Journal of Pain and Symptom Management, Oncology, Orellana L, Wolfe J

Early Palliative Care Is Associated With Less Intense Care in Children Dying With Cancer in Alabama: A Retrospective, Single-Site Study

BACKGROUND: Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. METHODS: This was a retrospective study of 233…

Tags: 2021, 2021 Special Edition - Oncology, Bhatia S, Cancer, Davis ES, End-of-life Care, Hospice, Hurst G, Johnston EE, Martinez I, Palliative Care, Pediatric Cancer

Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer

BACKGROUND: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. OBJECTIVE(S): To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to…

Tags: 2021, 2021 Special Edition - Oncology, Bakitas M, Currie ER, Gilbertson-White S, Johnston EE, Journal Of Palliative Care, Lindley LC, Mack J, Oncology, Roeland E

Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The "New" Lost Tribe

Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were…

Tags: 2021, 2021 Special Edition - Oncology, Burgers VWG, Husson O, Journal Of The National Comprehensive Cancer Network, McCabe MG, Oncology, Rijneveld AW, van den Bent MJ, Van Der Graaf WTA, van der Meer DJ

Browse Items (426 total)