10:50 am – 11:10 am Saturday, September 17

Understanding the Current State of Pediatric Oncology Nursing Quality Measurement in Free-Standing Children’s Hospitals Across the United States (229-2)

The impact of nursing care on patient outcomes has been demonstrated in adult and pediatric settings but limited attention has been given to standardized measurement of pediatric oncology nursing care.

With advances in pediatric cancer therapy, patients may be offered multiple treatment modalities which require intensive nursing support. To provide high quality care for these complex patients with evolving needs, pediatric oncology nurses require specialized skills, knowledge and appropriate resources. Given the gap in current literature addressing the impact of nurse sensitive measures that impact the quality of nursing care across the pediatric oncology continuum, the first step was to identify these potential measures. The ability to identify key performance measures and to articulate their value in the delivery of nursing care is central to improving the quality of the patient/family/employee experience in this highly complex and specialized environment. Using process measures allows for greater understanding of the extent to which clinical care is following best practice.

Pamela Dockx BSN RN CPON®
CNE Hours
2:55 pm –3:15 pm Saturday, September 17

Primary Caregivers’ Knowledge Attitudes and Beliefs toward Palliative Care for Children with Cancer (235-3)

Parents of children with cancer perform a myriad of caregiving tasks related to Pediatric Palliative Care (PPC) along the illness trajectory. Yet, their knowledge, attitudes and beliefs (KAB) toward PPC remain underexplored, especially in Low and Middle Income Countries (LMICs) where care relies heavily on the family. A better understanding of parent KAB would inform effective strategies to support the integration of PPC into the care of children with cancer and their families.

The purpose of this two-phase multicenter study among primary caregivers of children with cancer in Lebanon was to examine their KAB toward PPC in order to uncover areas for improvement, to determine factors associated with KAB, and identify primary caregivers’ PPC tasks in caring for their children with cancer.

5:00 pm - 5:20 pm Thursday, September 15

Symptom Experience, Self-Efficacy, and Self-Management Behaviors Reported by Adolescents and Young Adults with Cancer (211-1)

Adolescents and young adults (AYAs) with cancer experience co-occurring symptoms both during treatment and into survivorship. Most AYAs are healthy prior to diagnosis and need to learn self-management strategies for their cancer-related symptoms. Self-efficacy is requisite for AYAs to engage successfully in symptom self-management behaviors. Improving AYAs’ self-efficacy for managing symptoms and their use of effective symptom self-management behaviors can promote better outcomes for AYAs along the cancer care continuum.

The specific objectives were to describe the self-reported symptoms, self-efficacy for managing symptoms, and symptom self-management behaviors in a cross-sectional sample of AYAs with cancer.

4:05 pm – 4:25 pm Thursday, September 15

Parenting Beyond the Veil': Supporting Bereaved Parents as They Continue Their Parenting Relationship After a Child's Death (205-2)

Childhood cancer is the leading cause of illness-related death, leaving thousands of parents to experience bereavement. Parental bereavement is a new state of being, in which parents maintain the parenting relationship in the presence of the child’s absence. While the literature offers insight into continuing bonds, limitations exist related to generalizability and the highly individualized nature of bereavement. There is a need for further exploration to better understand the continuing parenting relationship that is part of the bereavement experience after a child’s death due to cancer.

The aim of this qualitative research study was to describe the lived experience of bereaved parents who experienced the death of a child due to cancer.

Christine Denhup PHD APRN CPNP-PC


CNE Hours
4:25 pm – 4:45 pm Thursday, September 15

Examining Existential Distress in Adolescents with Advanced Cancer (205-3)

The life-threatening nature of advanced cancer has many psychosocial effects on both the patient and the family. Adolescents are mature enough to understand death and to have developed life goals, yet are also experiencing a period of distinct developmental challenges and psychosocial dynamics. As a result, existential distress may be highly significant and uniquely experienced by adolescents with advanced cancer. Existential distress and its impact on symptom management, suffering, and other patient outcomes have not been well-studied in adolescents with cancer.

This purpose of this paper is to analyze the concept of existential distress, highlighting and raising awareness of how existential distress may impact adolescents with advanced cancer and their families


3:45 pm – 4:05 pm Thursday, September 15

Approaches to Facilitate Patient-Reported Outcome Symptom Assessments in Children and Adolescents with Cancer (205-1)

Children and adolescents with cancer suffer with symptoms related to their diagnosis and to cancer-directed therapies; symptoms that are frequently poorly recognized and may be under-treated by clinicians. When symptoms persist or become severe, they can lead to dose-reductions and even premature discontinuation of cancer-directed therapies, which, in turn, can negatively affect treatment efficacy and survivorship. The first step to improving symptom management is to develop a better method for assessing and tracking symptoms. Read more...
3:45 pm – 4:45 pm Thursday, September 15

We're Done! Now What? Determining End of Treatment Needs of Childhood Cancer Survivors and their Parents (201)

As the number of child cancer survivors (CCS) increases, so has the recognition of the unique needs of this group throughout the cancer-survivorship continuum. The end of cancer treatment (EOT) is a critical timepoint on this continuum. Family support and education needs at EOT are estimated to be at a similar level to what they were at diagnosis. Indeed, CCS and their parents report feeling unprepared for the physical, emotional, and psychosocial challenges inherent in recovering from treatment and reintegrating back into school, work, and family life. Read more...
5:00 pm – 6:00 pm Thursday, September 15

Toward a Cure for Sickle Cell Disease: Exploring Gene Therapy (210)

Sickle cell disease (SCD) is the most common inherited blood disorder worldwide. It is estimated that 300,000 babies are born with SCD every year and it occurs largely in descendants of Sub Saharan Africa. SCD is caused by a specific mutation in the beta globin gene that results in sickle hemoglobin production. Sickle hemoglobin polymerization leads to red blood cell sickling, chronic hemolysis and vaso - occlusion. Patients with SCD experience significant pain crisis and end organ damage that leads to a decreased lifespan with a median life expectancy in the United States of 43 years. At this time, the only known cure for SCD is hematopoietic stem cell transplantation (HSCT) most often with matched sibling donors. Read more...
5:00 pm – 5:30 pm Thursday, September 15

The Role of the Pediatric Clinical Research Nurse in the Management of Severe Aplastic Anemia (208-1)

Severe aplastic anemia (SAA) is a serious and life-threatening condition with an unknown etiology, involving improper production of stem cells due to damaged bone marrow. Without functional stem cells, the body is depleted of red blood cells, white blood cells, and/or platelets. With only 600 to 900 cases diagnosed each year in the U.S. alone, SAA is rare. Most patients are only provided supportive care measures: receiving blood transfusions to manage symptoms and adhere to complex medication regimens to limit complications; however, advancements in treatment of SAA are made possible through clinical research trials. The Clinical Research Nurse (CRN) must address the clinical needs of the research patient, but also be sensitive to the psychosocial and ethical issues of supporting pediatric research patients. This case study presents a 7-year old Mongolian patient, “M.B.”, with refractory SAA, who failed standard immunosuppressive therapy and failed to engraft from a previous expanded umbilical cord stem cell transplant. M.B. was enrolled in a clinical research protocol in which he underwent a haplo-identical transplantation using peripheral blood stem cells and post-transplant GVHD prophylaxis using Cyclophosphamide. M.B.’s complex clinical trajectory will unfold over the course of the case study, with the role of the Clinical Research Nurse highlighted. In addition to clinical complications, the COVID-19 pandemic added an additional layer of psychosocial and ethical complexities for M.B. and his family to navigate. Application of the Clinical Research Nurse Domain of Practice ensures that the bedside nurse addresses the holistic needs of the research patient and caregiver at the bedside, while also maintaining the integrity of the research protocol. Read more...
Alejandra Castillo MSN RN
CNE Hours
5:30 pm – 6:00 pm Thursday, September 15

Onco-Critical Care 101 (209-2)

Pediatric Oncology nurses are frequently exposed to patients with oncologic emergencies and who become critically ill requiring transfer to the PICU. They are familiar with conditions requiring transfer but happens to these patients while they are in the PICU? When the patient is transferred back to the regular oncology floor or presents back in clinic, it is helpful for the nurse to know what happened to their patient in the PICU. Common oncology critical care interventions such as CRRT, vasopressors, respiratory support, ect are largely unfamiliar to oncology nurses but can be helpful to understand for post PICU care and in situations where care must be initiated by the nurse on the floor. This presentation will cover the basics of Oncology Critical Care including recognizing oncologic emergencies that should trigger transfer to PICU and how these conditions are treated once the patient is in the PICU. Read more...
Katie Gardner MSN APRN CPNP-AC
CNE Hours
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