Child and caregiver voices about inpatient care: What do they report as positive and as needing improvement?

Purpose: In pediatric healthcare, patient satisfaction queries exclude children and solicit quantitative ratings from caregivers. We sought satisfaction perspectives from hospitalized children 7 to 17 years and their caregivers by qualitatively analyzing interview responses.

Design And Methods: English and Spanish-speaking children and their parents on five inpatient units completed two open-ended questions about their satisfaction at hospital discharge (T1, face to face) and 7 to 10 days later (T2, telephone).

Profiles of Symptom Suffering and Functioning in Children and Adolescents Receiving Chemotherapy.

Background: Some children and adolescents receiving chemotherapy experience few symptom-related adverse events, whereas others experience multiple adverse events. If oncology nurses could identify patients likely to have pronounced chemotherapy-related adverse events, tailored supportive care could be matched to these patients' symptom burdens.

Objective: The aim of this study was to identify symptom profiles in children and adolescents before and after chemotherapy, and the sociodemographic and psychological factors associated with profile classification and change.

NICU Parents of Black Preterm Infants: Application of the Kenner Transition Model.

Background: Black infants in the United States have the highest incidence of both infant mortality (IM) and preterm birth among all racial/ethnic groups. The IM disparity for Black preterm infants often occurs after neonatal intensive care unit (NICU) discharge, when parents become the primary caregivers. The revised Kenner Transition Model (KTM) is situation specific and comprised 5 interrelated domains of parental need after NICU discharge that have not been previously applied to the transition from NICU to home of Black infants.

Parent Protector: Perceptions of NICU-to-Home Transition Readiness for NICU Parents of Black Preterm Infant.

Black infants have twice the incidence of infant mortality (IM), death before the first birthday, and preterm birth in comparison to other US racial/ethnic groups; these factors make Black infants a high-risk group. The literature on the factors impacting caregivers and home environments for these infants is sparse. The purpose of this descriptive qualitative study was to explore perceived parental readiness to care for their Black preterm infants at home after discharge from a neonatal intensive care unit (NICU).

Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials.

Purpose: To examine concordance in symptomatic adverse event (AE) grading using the Common Terminology Criteria for Adverse Events (CTCAE 4.0) for clinicians and its patient-reported outcome (PRO) versions for children (Ped-PRO-CTCAE) and caregivers (Ped-PRO-CTCAE [Caregiver]).

Methods: Children age 7-18 years with a first cancer diagnosis, their clinicians, and caregivers completed CTCAE-based measures before starting a treatment course (T1) and after the treatment (T2).

Recommended scoring approach for the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events.

Background: Collecting symptom, function, and adverse event (AE) data directly from children and adolescents undergoing cancer care is more comprehensive and accurate than relying solely on their caregivers or clinicians for their interpretations. We developed the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) measurement system with input from children, parents, and clinicians. Here, we report how we determined the recommended Ped-PRO-CTCAE item scoring approach.

"It Can Be Hard But It's Not Bad": Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research.

To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated.

The Impact of Demographics on Child and Parent Ratings of Satisfaction with Hospital Care.

Introduction: Patient satisfaction ratings differ between minority and nonminority respondents in studies of hospitalized adults, but little is known about such differences in pediatrics. Our goal was to determine if patient satisfaction ratings completed by hospitalized children and their parents at the point of discharge differed by race/ethnicity, language, child gender, and age.

Methods: We used a mixed-methods design.

Robotic Uses in Pediatric Care: A Comprehensive Review.

Problem: Advances in technology have made robotics acceptable in healthcare and medical environments. The aim of this literature review was to examine how the pediatric population can benefit from robotic therapy and assistance that are currently available or being developed in diverse settings.

Eligibility Criteria: English language full-text publications focusing on pediatric robotic therapy studies for infants and children under the age of 17 indexed in PubMed and CINAHL and published from 2008 to 2018.

The Child's Voice in Satisfaction with Hospital Care.

Purpose: Patient satisfaction is a quality improvement indicator used to evaluate care. Ratings of patient satisfaction in pediatrics exclude the child voice. We tested the feasibility and acceptability of a new model that included both child and parent satisfaction ratings.

PROMIS pediatric measures validated in a longitudinal study design in pediatric oncology.

Purpose: This study assessed the responsiveness to change over time and theorized associations of Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric measures in children and adolescents in treatment for cancer to determine measure readiness for use in cancer clinical trials.

Methods: We administered eight PROMIS (three symptom, two psychological, and three performance) pediatric short-form measures and the Symptom Distress Scale (SDS) to 96 pediatric oncology patients at three time points during a course of chemotherapy. We assessed responsiveness using paired t tests and generalized estimating equation (GEE) models, calculated standardized response mean (SRM) values for PROMIS measures, and examined scores over three data points (T1-T3).

The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology.

Purpose: Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study's purpose was to determine relationships between literacy, age, and race and their influence on a child's ability to understand and complete a PRO instrument.

Methods: The Wide Range Achievement Test was used to evaluate literacy in children and young adults with cancer, participating in a cognitive interview for the Pediatric PRO-CTCAE instrument.

Cognitive Interview-Based Validation of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events in Adolescents with Cancer.

Context: The National Cancer Institute created the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) to allow direct input on symptomatic adverse events (AEs) from adult patients in oncology trials.

Objectives: This study sought to determine the youngest age to complete the PRO-CTCAE, evaluated comprehension of PRO-CTCAE among adolescents, tested new items not currently in PRO-CTCAE, and tested a parent-proxy version.

Methods: From seven pediatric cancer hospitals, 51 adolescents (13-20 years) receiving cancer treatment participated, along with 40 parent proxies.

Eliciting the child's voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative.

Background: Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the child's voice. The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is being developed to assess symptomatic AEs via child/adolescent self-report or proxy-report. This qualitative study evaluates the child's/adolescent's understanding and ability to provide valid responses to the PRO-CTCAE to inform questionnaire refinements and confirm content validity.

Cooperative Clinical Conferences: Nursing Student Pediatric Clinical Innovation.

Background: A gap exists between nursing student classrooms (i.e., clinical training) and newly graduated RNs' real-world nursing experiences.