Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for…
BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study…
ImportanceThe associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.ObjectiveTo model the association of spiritual and religious constructs with patient-reported outcomes of anxiety,…
BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates…
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We…
Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encour-age early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients,…
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…
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may…
Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases…
PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority…
Context Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not…
Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little…
Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the…
BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options., METHODS: This qualitative…
BACKGROUND: In developed countries, cancer remains the leading cause of pediatric death from illness after the neonatal period. OBJECTIVE: To describe the end-of-life care characteristics of children and adolescents with solid tumors (ST) or…
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this…
CONTEXT: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. OBJECTIVES: To describe perceived financial…
Background: The global incidence of cancer is increasing, and the Middle East is projected to be one of the most impacted regions. Increasing number of people would benefit from palliative care (PC), but access is poor, especially for children.…
PURPOSE: Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the…
Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and…
Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination ("nonbillable"time), but the…
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…
BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been…
Introduction: The most frequent tumors in childhood are leukemias, central nervous system tumors, lymphomas, and neuroblastoma. According to Brazilian National Institute of Cancer (INCA), these patients should maintain follow-up with a…
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…
BACKGROUND: Adolescents and young adults (AYAs) with cancer may experience elevated rates of high-intensity end-of-life (HI-EOL) care. Locus-of-care (LOC) disparities (pediatric vs adult) in AYA end-of-life (EOL) care are unstudied. METHODS: A…
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…
Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and…
OBJECTIVES: Cancer patients constitute an important group in pediatric palliative care. Though the patients' home is the preferred place of care, little is known about the characteristics of patients attended by units that provide home assistance.…
PURPOSE: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the…
This mixed method study explored parent and child characteristics that impact grief and personal growth in parents (n = 119) after a child dies from cancer in Australia. Medical components of a child's cancer care including radiation treatment,…
Background/Objectives: Palliative and supportive care needs of children with cancer and their families are unique and require special attention. Development of appropriate services sensitive to the needs of families and based on observed evidence has…
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…
Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care.…
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…
BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for…
BACKGROUND: Despite rising childhood cancer incidence, low-middle income countries often fall short of quality resources to prioritize and develop psycho-oncology services. Patients and families suffering from cancer are subject to great…
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…
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…
