Paper Presentations Disclaimer: 1 CNE contact hour will be awarded for attending all three paper presentations presented during each time-slot. Partial credit is not available.

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...

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.

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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

 

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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.

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Preschool-Aged Child Self-Reported Cancer Communication Preferences (211-2)

Psychosocial care standards recommend that children and adolescents are engaged in their childhood cancer treatment according to their developmental abilities (Weiner et al, 2015). The study of child and adolescent cancer treatment communication has focused on school-age and adolescent children, but very few studies address preschool-aged child cancer communication. Identifying how preschoolers talk about their communication preferences could provide greater understanding of their self-reported needs. Read more...

Wearing Two Hats: Professional Boundaries When Balancing Direct Care and Research Roles (223-3)

Nursing care, whether in the clinical or research context, is guided and directed by the ANA Code of Ethics for Nurses. The Code of Ethics is based on the ethical principles of beneficence, nonmaleficence, autonomy and justice. These principles can serve to guide nurses as they navigate what may seem to be competing roles of direct-care nurse and nurse intervenor. This presentation will describe: 1) role conflicts that may present when the nurse functions as both care provider and intervenor as part of a research study and 2) strategies for managing role conflict.

Learning Objectives:

• Describe role conflicts that may present when direct care nurses including advance practice nurses serve as intervenors in randomized clinical trials.
• Identify key ethical principles that the nurse must always consider when providing care either in the clinical or research context.
• Outline strategies to manage role conflicts that may present when direct care nurses serve as intervenors in randomized clinical trials.

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Pediatric Oncology Safety Simulation (223-2)

Pediatric Oncology patients are at high risk for rapid deterioration given their severity of illness, toxicity of interventions and associated immunosuppression. Pediatric Oncology focused escalation of care for patients experiencing clinical deterioration continues to present significant challenges within healthcare. At the current institution a two-year review of inpatient and outpatient oncologic emergencies was evaluated, and a comprehensive Oncology Safety Simulation Program was developed.The Oncology Safety Simulation Program has offered a hands on multi-disciplinary approach to educating physicians, nurse practitioners, nurses and pharmacists on safe practices during Oncology medical emergencies. Outcome data has been tracked to evaluate attendees' satisfaction and attendees' evaluation of their ability to utilize the education to change practices at the bedside. Data has been tracked with regards to use of intramuscular epinephrine administration during anaphylaxis and time to implementing the sepsis protocol during a sepsis workup. The simulation process development timeline will be reviewed, outcome data will be shared and latent safety effects will be reviewed.

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Decreasing Ambulatory CLABSIs in Oncology Patients (223-1)

Ambulatory CLABSIs occurring in the pediatric oncology patient population result in increased hospitalizations, additional medications, potential for line removal, delayed treatment, decreased pt. satisfaction, and potentially worse pt. outcomes. While much attention has been given to hospital acquired infections, less focus has been given to community occurring infections. This session will describe a quality improvement project performed with the aim of decreasing the rate of ambulatory CLABSIs.

Learning Objectives:

• The learner will be able to discuss the problem of ambulatory CLABSIs in the oncology population
• The learner will identify potential cause and effect of ambulatory CLABSIs
• The learner will be able to describe quality improvement initiatives designed to decrease incidence of ambulatory CLABSIs

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HSCT for MPS disorders (Hunters and Hurlers), (217-2)

Hematopoietic Stem Cell Transplant (HSCT) is best known as a treatment modality for hematologic malignancies, some solid tumors, and various autoimmune disorders. It is lesser known as a means to halt progressive symptoms in certain chromosomal inherited disorders such as Hunters and Hurlers disease. Patients with Hunters and Hurlers are born with an inherited x-linked chromosomal disease where sugar molecules are unable to be broken down and digested by the body causing both physical and mental disabilities. There is no cure for these diseases but HSCT is an intensive therapy that has shown promise with these diagnoses, helping to stop progression of symptoms of disease.

Two case studies of children who underwent HSCT at our center, one for Hunter’s and one for Hurler’s, will be presented from both a medical and psychosocial standpoint. How these children first presented, how HSCT affect their disease, the complications they underwent during their HSCT, and the complex psychosocial aspects of receiving chemotherapy as well as an extended hospitalization.

Learning Objectives:

• The learner will describe the role of Hematopoietic Stem Cell Transplant in the treatment of non-malignant diseases.
• Identify conditioning regimens and their unique complications for non – malignant diseases.
• The learner will describe the psychosocial needs of hematopoietic transplant patients and their families when they undergo a complex regiment such as HSCT.

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Insurance and Neighborhood Opportunity Predict Adverse Events in Children with Acute Lymphoblastic Leukemia (217-1)

Our prior research uncovered potential socioeconomic (SE) risk factors for two adverse events that impact children hospitalized with acute lymphoblastic leukemia (ALL): hyperglycemia and severe sepsis. That research, however, was limited to only two measures of SE status, insurance source and median neighborhood income. Composite indices of neighborhood social and economic stability are useful in gleaning understanding of pathways between a child’s immediate environment and health outcomes. Yet, there is little reporting of the best way to measure these aspects of a child’s environment in pediatric oncology nursing research.

This study was a side-by-side comparison of three measures of SE status: insurance source, area deprivation and neighborhood child opportunity. The study goal was to determine each one’s utility as risk a predictor of hyperglycemia and serious infections, two outcomes our team has shown are potentially influenced by SE factors.

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