A5009818166- Childhood Cancer Survivors' Quality of Life
- Palliative Care and End-of-Life Issues
- Ethics and Legal Issues in Pediatric Healthcare
- Family Support in Illness
- Family and Patient Care in Intensive Care Units
- Cancer survivorship and care
- Adolescent and Pediatric Healthcare
- Pediatric Pain Management Techniques
- Acute Lymphoblastic Leukemia research
- Family and Disability Support Research
- Infant Development and Preterm Care
- Health Sciences Research and Education
- Optimism, Hope, and Well-being
- Healthcare professionals’ stress and burnout
- Patient-Provider Communication in Healthcare
- Nursing Diagnosis and Documentation
- Sleep and related disorders
- Delphi Technique in Research
- Ethics in medical practice
- Nursing education and management
- Nursing Education, Practice, and Leadership
- Resilience and Mental Health
- Erythropoietin and Anemia Treatment
- Hemoglobinopathies and Related Disorders
- Health Systems, Economic Evaluations, Quality of Life
Children's National
2016-2025
George Washington University
2016-2025
National Hospital
2020-2025
George Washington University Hospital
2021-2024
Boston College
2024
Emory University
2024
Wellesley College
2024
Johns Hopkins University
2024
University of America
2024
Catholic University of America
2024
The purpose of this article is to identify the general methodologic and data set-specific challenges that must be overcome when attempting a secondary analysis qualitative data. Two separate examples analyses sets are also described, including one unsuccessful beginning.
The viewpoint of the terminally ill child at time an end-of-life decision has not been formally investigated. We identified preferences children and adolescents with advanced cancer about their care factors that influenced decisions.Pediatric patients 10 or more years age were interviewed within 7 days participating in one following three decisions: enrollment onto a phase I trial (n = 7), adoption do resuscitate order 5), initiation terminal 8). patient, parent, primary pediatric oncologist...
When a child's cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative decision making. One factor that helps make these decisions and remain satisfied with them afterward is deciding as they believe good parent would decide. Because being child incurable has not been formally defined, we conducted descriptive study develop such definition.In face-to-face interviews, 62 who had made one of three (enrollment on phase I study, do resuscitate...
Parents' beliefs about what they need to do be a good parent when their children are seriously ill influence medical decisions, and better understanding of these may improve decision support.To assess parents' perceptions regarding the relative importance 12 good-parent attributes.A cross-sectional, discrete-choice experiment was conducted at children's hospital. Participants included 200 parents with serious illness.Ratings attributes, subsequent use latent class analysis identify groups...
Hypothalamic obesity is a devastating complication in children surviving brain tumors and/or cranial irradiation. These subjects are thought to exhibit autonomic dysregulation of the β-cell, with insulin hypersecretion response oral glucose tolerance testing (OGTT). We report results randomized, double-blind, placebo-controlled trial octreotide therapy for pediatric hypothalamic obesity. Eighteen [weight, 100.6 ± 5.6 kg; body mass index (BMI), 37.1 1.3 kg/m2] received (5–15 μg/kg·d sc) or...
The purpose of this study was to develop and test three instruments measure fatigue in children with cancer from the perspectives child, parents staff. consisted phases: instrument development, content validation, estimations psychometric properties instruments. One hundred forty-nine between ages 7–12 years presently receiving chemotherapy for cancer, 147 124 staff participated study. demonstrated strong initial validity reliability estimates. This is first provide valid reliable cancer.
Abstract Background Establishing the ability of children and adolescents with cancer to complete NIH‐sponsored PROMIS pediatric measures electronically preliminary validity estimates (both full item banks short forms) in oncology will contribute our knowledge impact treatment on these young patients. Procedures A total 203 8‐ 17‐year olds were administered eight a cross‐sectional study design establish known‐group validity. Of 200 who completed all or most items, slight majority male (55.5%)...
To describe nocturnal awakenings and sleep environment interruptions experienced by children adolescents hospitalized for two to four days receive chemotherapy assess the relationships among awakenings, interruptions, duration, fatigue.Longitudinal, descriptive design.St. Jude Children's Research Hospital Texas Cancer Center.25 patients with solid tumors 4 acute myeloid leukemia.Actigraphy, fatigue instruments, diary, room entry exit checklists, blood samples.Nocturnal fatigue.The number of...
Abstract BACKGROUND. Dexamethasone improves the cure rate of childhood acute lymphoblastic leukemia (ALL) but causes physical and behavioral adverse events. The objective current study was to determine effect dexamethasone exposure on sleep fatigue in pediatric patients with ALL. METHODS. One hundred low‐risk or standard‐risk ALL were enrolled 1 3 protocols (St. Jude Total XV, Children's Oncology Group [COG] 9904, COG 9905) at institutions. mean age cohort 9.24 ± 3.23 years (range,...
Over the past decades, some scientific progress has been made in understanding and treating cancer-related fatigue (CRF). However, three major problems have limited further progress: lack of agreement about measurement, inadequate underlying biology, conduct clinical trials for CRF. This commentary reports recommendations a National Cancer Institute Clinical Trials Planning Meeting an ongoing working group to address these so that high-priority research can be conducted advance science CRF...
Objective: To identify factors important to parents making decisions for their critically ill child. Design: Prospective cross-sectional study. Setting: Single center, tertiary care PICU. Subjects: Parents critical treatment Intervention: One-on-one interviews that used the Good Parent Tool-2 open-ended question asks describe parenting child and how clinicians could help them achieve definition of “being a good parent” responses were analyzed thematically. also ranked themes in order...
Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where initial goals, such as curing the condition, may have become exceedingly unlikely. While continue to pursue these others relinquish goals and generate new maintaining child's quality life. We call this process transitioning from one set another regoaling.Regoaling involves factors that either promote or inhibit regoaling process, including...
Adult patients are considered the best reporters of their own health-related quality life (HRQOL). Self-report in pediatrics has been challenged by a limited array valid measures. Caregiver report is therefore often used as proxy for child report.To examine degree alignment between and caregiver Patient-Reported Outcomes Measurement Information System (PROMIS) HRQOL domains among children with cancer to identify factors associated better caregiver-proxy congruence.In this multicenter cohort...
This qualitative study investigated the medical decision-making preferences of adolescent oncology patients and parental clinician behaviors that adolescents report to be supportive their preferred level involvement.Interviews were conducted with 40 between ages 12 18 years who undergoing cancer treatment in Memphis, Tenn or Washington, DC. Role converted into a predetermined Likert scale decisional preference score. A semantic content analysis was used analyze patient reports behaviors,...