Outcomes: 1. Describe the development of essential competencies for psychologists in pediatric palliative care (PPC) 2. Discuss psychologists' roles in PPC, research, and education and the value of inclusion as members of the multidisciplinary PPC…
Outcomes: 1. Describe how design thinking methodology can be applied to palliative care problems to create novel solutions and products for patients and families 2. Identify the stages of life for a patient with severe neurologic impairment and…
CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To…
Outcomes: 1. Describe the evidence-based benefits of serious illness conversations 2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program Background…
OBJECTIVE: Describe pediatric palliative care (PPC) patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. DESIGN: Retrospective cohort…
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their…
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…
Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19…
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents…
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…
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…
CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric…
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early…
CONTEXT: Globally, approximately 21.6 million children need pediatric palliative care (PPC). The greatest burden lies in low- and middle-income countries, where the demand for PPC exceeds available resources. OBJECTIVES: The objective of this study…
CONTEXT: In sub-Saharan Africa there is no standardized approach to pediatric palliative care assessment. Because of this, there is a critical demand for evidence-based assessment tools that identify specialized needs of children and their families…
CONTEXT: Outcomes for children with cancer in sub-Saharan Africa (SAA) are dismal due to delayed diagnosis and limited access to curative therapy. When establishing a pediatric hematology-oncology (PHO) program in low-resource settings, early…
Context: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.Objective: The objective was to determine the…
CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and…
CONTEXT: Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that…
Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. Objective(s): To identify barriers to effective symptom management in pediatric advanced cancer. Method(s):…
Outcomes: 1. Compare and contrast perspectives of multidisciplinary providers in regard to an embedded model of pediatric palliative care (PC) in routine cancer care 2. Propose an embedded PC model of care in the learner's own practice setting…
CONTEXT: Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access.…
Outcomes: 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk…
Objectives 1. Describe the concept of hope based on perspectives of AYAs who experienced advanced cancer. 2. Differentiate the role hope has for AYAs before, during, and after experiencing cancer. Context In clinical care, addressing patients’ hopes…
Context Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered…
Context Children with medical complexity (CMC) are often cared for by both complex care and palliative care pediatric teams. No prior research has investigated the relationship between these two disciplines. Objectives The purpose of this article is…
Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared…
The prevalence of Pediatric Palliative Care (PPC) programs for children significantly increased over the past two decades. In more recent years, however, evidence suggests a plateau in program expansion and service reach, despite the current reality…
Pediatric palliative home-based care has been shown to improve symptoms, quality of life, and coordination of care. Despite these successes, hospital utilization in our own palliative home-based care population remained high as some caregivers lacked…
Context: Structural racism negatively impacts individuals and populations. In the medical literature, including that of palliative care, structural racism's influence on interracial differences in outcomes remains poorly examined. Examining the…
CONTEXT: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. OBJECTIVE: To describe the design and lessons…
CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they…
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting…
CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families…
CONTEXT: Childhood cancer care is delivered by interprofessional healthcare teams however little is known about how parents perceive overall team-delivered care (TDC). OBJECTIVES: We sought to describe parent perceptions of TDC and associated…
Context : Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based…
Context. Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. Objective. To describe the design and lessons…
CONTEXT: Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas. OBJECTIVES: To…
