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). The questions asked about what was good and what could be better at the hospital. Responses were analyzed using descriptive semantic content analysis and consensus coding methods. RESULTS: Patients' mean age was 11.9 years (SD = 3.17); 51% were male. At T1, 362 patients offered 833 responses; 600 parents offered 1496 responses. At T2, 252 patients offered 552 responses; 488 parents offered 1290 responses. At T1 and T2, the most frequent patient response to what was good was 'Staff took good care of me' and for caregivers was 'Staff behaving professionally'. At T1, the most frequent patient response about what could be better was 'more activities for kids', and at T2, 'Nothing' and 'More food options and better food quality'; for caregivers at T1, 'Nothing' and 'Not liking the physical space', and at T2, 'Nothing', and 'More communication and professionalism from hospital staff'. CONCLUSIONS: Pediatric patients and their caregivers are willing and able to offer perspectives about satisfaction with care, and suggestions for improvement before discharge. PRACTICE IMPLICATIONS: Pediatric patients and their caregivers' perspectives about care yield actionable recommendations for hospital systems.

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. METHODS: Participants ranging from 7 to 18 years (n = 436) completed 6 Patient-Reported Outcomes Measurement Information System pediatric symptom measures within 72 hours preceding (T1) and 1 to 2 weeks after (T2) chemotherapy. Profile membership and change were determined by latent profile/latent transition analyses. Associations with profiles and profile transitions were examined using multinomial logit models and logistic regression. RESULTS: Three symptom suffering profiles were identified at T1 and T2: high, medium, and low. The high symptom suffering profile included the fewest participants (T1, n = 70; T2, n = 55); the low symptom suffering profile included the most participants (T1, n = 200; T2, n = 207). Of the participants, 57% remained in the same profile from T1 to T2. Psychological stress was significantly associated with T1 and T2 profile classifications and profile transition; age was associated with profile classification at T1. CONCLUSION: Three symptom suffering profiles existed in a sample of pediatric patients undergoing chemotherapy, indicating that children and adolescents have differing cancer treatment experiences. IMPLICATIONS FOR PRACTICE: Oncology nurses could screen pediatric oncology patients for their symptom suffering profile membership and subsequently prioritize care efforts for those with a high suffering profile.

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. PURPOSE: This study's purpose was to explore the conceptual fit of parental readiness to care for their Black preterm infants after NICU discharge with the revised KTM. METHODS: A qualitative descriptive research approach was used for this single-site study of NICU parents of Black preterm infants. Qualitative analysis of 10 parents' perceptions before NICU discharge was via semantic content analysis; data were organized into categories aligned with the KTM. The Transition Questionnaire (TQ), an adjunct to the KTM, provided self- report quantitative data. RESULTS: All parents endorsed the "Information Needs," "Stress and Coping," and "Professional Support" domains of the KTM. Parent TQ responses indicated perceptions of moderate to high levels of home transition readiness after NICU discharge. IMPLICATIONS FOR PRACTICE AND RESEARCH: The domains of the revised KTM were affirmed by parents of Black preterm infants in this study via coded interview and TQ responses. Additional study exploring the clinical assessment of transition readiness with theoretical grounding in diverse NICU families is warranted. VIDEO ABSTRACT AVAILABLE AT: https://journals.lww.com/advancesinneonatalcare/Pages/videogallery.aspx .

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). Ten NICU parents of Black preterm infants completed a structured interview and self-report questionnaires before hospital discharge; data were analyzed using descriptive and semantic content methods. Coded parent responses were categorized as Parent Protector of Infants' Health (n = 94, 29.2%); Hindrances to Parental Readiness for Transition to Home (n = 97, 30.1%), and Parent as Partner in NICU to Home Transition (n = 131, 40.6%). All parents rated themselves "confident" (n = 6) or "very confident" (n = 4) in their ability to care for their infant after NICU discharge. Partnership with the healthcare team was described as involving health information resources, effective communication, and, most importantly, support for the parental role as infant protector for transition to home for their high-risk infant after NICU discharge.

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). Grades (0-3) were assigned by each reporter for 15 core AEs spanning physical and mental health. Mean grades were compared between reporters using two-sample t-tests; agreement was estimated using weighted kappa (κ) statistics. Multivariable mixed regression models were used to evaluate associations of clinical factors with AE reporting concordance. Significance was set at α = .05 (two-sided). RESULTS: There were 438 child-clinician-caregiver triads with complete data at either T1 or T2. For children, the mean age was 13 years (standard deviation = 3.4), 53.7% were male, 32.6% non-White, and 56.4% had leukemia/lymphoma. At T1, clinician mean AE grades were significantly lower (ie, better) than children for all AEs and remained significantly lower at T2 except for constipation, nausea, anorexia, neuropathy, and anxiety. Caregiver mean AE grades were similar to children at T1 and significantly higher (ie, worse) at T2 for nausea, vomiting, anorexia, pain, fatigue, anxiety, and depression. Agreement for child-clinician grading was poor-to-fair at T1 (κ range, 0.08-0.34) and T2 (0.11-0.35), and for child-caregiver, was fair-to-good at T1 (0.34-0.65) and T2 (0.24-0.60). No factors were consistently associated with reporter concordance across AEs. CONCLUSION: Compared with children, symptomatic AEs were consistently under-reported by clinicians with low agreement and over-reported by caregivers with low-moderate agreement. Direct reporting by children using Ped-PRO-CTCAE or similar measures should be routinely incorporated for toxicity assessment in clinical trials.

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. METHODS: Data from 271 patients were analyzed using three scoring approaches: (a) at the AE attribute (frequency, severity, interference) using ordinal and dichotomous measures; (b) a weighted composite AE item score by AE attribute (0.5 - frequency; 1.0 - severity; 1.5 - interference); and (c) overall number of AEs endorsed. Associations of each AE attribute, AE item score, and overall AE score with the Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric measures were examined. The ability of the overall Ped-PRO-CTCAE AE score to identify patients with PROMIS symptom T-scores worse than reference population scores was assessed. Clinician preference for score information display was elicited through interviews with five pediatric oncology clinical trialists. RESULTS: The diverse scoring approaches yielded similar outcomes, including positive correlations of the Ped-PRO-CTCAE attributes, AE item score, and the overall AEs score with the PROMIS Pediatric measures. Clinicians preferred the most granular display of scoring information (actual score reported by the child and corresponding descriptive term). CONCLUSIONS: Although three scoring approaches yielded similar results, we recommend the AE attribute level of one score per Ped-PRO-CTCAE AE attribute for its simplicity of use in care and research.

"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.

Background: 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. Design: 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. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%). Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted. Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: "Hoping to help others," "Speaking about what is hard is important," and "Being in the study was sometimes hard but not bad." Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.

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. SAMPLE: A total of 272 articles were identified, 69 full-text articles were retrieved and assessed for eligibility, and 21 studies were finally used in the literature review. RESULTS: From 21 studies, all studies reviewed showed that children benefited from robotic therapies were 1) responsive to the therapies and 2) favored robot's presence since the robotic systems increased their attention and ability to participate in tasks. Due to small sample size, results were statistically inconclusive. CONCLUSIONS: We identified positive findings, where utilizing pediatric robots played vital roles in assisting and enhancing current pediatric and NICU treatments. Overall, our findings suggested that more clinical trials would be essential, but the uses of robots may contribute to the future advancement in pediatric and neonatal healthcare. IMPLICATIONS: These review and analysis can be used to inform healthcare environments where there is a room for applying robotic assistance, although most studies required further testing with larger sample size to validate their results. This suggests the need for further research for robotics in pediatric and neonatal healthcare.

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. English and Spanish-speaking families from 5 inpatient units at 1 pediatric hospital completed ratings, face-to-face, before scheduled hospital discharge (T1), and again by telephone after discharge (T2). Participating children and their parents completed an 8-item satisfaction survey, and parents additionally completed 7 discharge readiness items. Results: The refusal rate was 10.7%, with 600 families enrolled; non-white families represented 66% of both study refusals and completions. The proportion of racial/ethnic groups in our study exceeded those in our standard survey sample. There were no significant differences in satisfaction ratings between non-white and white families or by child gender, age, or language. Conclusions: The lack of rating differences by demographic characteristics, the low refusal and attrition rates, and a more racially/ethnically representative sample of both child and parent perspectives indicate this approach to measuring satisfaction is acceptable and feasible to demographically diverse families.

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. DESIGN AND METHODS: We executed a randomized, two-arm, unblinded cohort study comparing child (aged 7-17 years) and parent reports (Arm 1) to parent report only (Arm 2) among a convenience sample of inpatients at a single urban pediatric medical center. The primary (feasibility and acceptability) and secondary outcomes were assessed at the time of discharge (T1) and approximately 10 days following discharge (T2) (standard timing). RESULTS: Of 672 screened families, 89.3% (n = 600) enrolled in the study; 362 children and parents were randomized to Arm 1 and 238 parents to Arm 2. Patients (98.6%) and parents (99.8%) indicated preference for providing satisfaction ratings at the time of discharge. Seventy-five percent of families (n = 488) completed T1 and T2; neither child nor parent ratings differed significantly between T1 and T2 nor did parent ratings differ between the two study arms. Nurse friendliness, courtesy, and feeling well cared for were among the highest rated items at T1 and T2 by both children and parents. CONCLUSIONS: Children 7 to 17 years of age and their parents are willing and like to provide satisfaction with care ratings prior to hospital discharge. PRACTICE IMPLICATIONS: This measurement model could yield valid findings representative of hospitalized children and their parents, and could become the basis for a new and needed measurement approach for pediatric satisfaction with hospital care.

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). Guided by the theory of unpleasant symptoms (TOUS), we examined associations among the PROMIS measures, the SDS, and other variables using GEE. RESULTS: The paired t tests showed statistically significant changes in two psychological measures and one performance measure from T1 to T2; three symptom, two psychological and two performance measures from T2 to T3; and three symptom and two psychological measures from T1 to T3. Findings from GEE models indicate PROMIS pediatric measures had statistically significant short-term and long-term changes, controlling for demographic and clinical variables. One performance measure did not achieve significant change at any time point. We found positive support for theorized relationships in the TOUS. CONCLUSIONS: Most of the PROMIS pediatric measures demonstrated changes over time and had significant relationships as theorized, thus supporting concurrent and construct validity of these measures when administered to pediatric oncology patients during a course of chemotherapy. This evidence supports the measures' readiness for use in clinical trials.

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. 140 participants (7-20 years) were recruited from 8 sites. Logistic regression and multivariable liner regression were used to examine relationships among key variables. RESULTS: Higher literacy scores were significantly associated with fewer PRO-CTCAE items being identified as "hard to understand" (p = 0.017). Literacy scores increased with age, but older participants were more likely to fall behind expected reading levels compared with US norms. A 1-year increase in age was associated with a 19% increase in the likelihood for being below the expected WRAT word reading score (OR 1.19; 95% CI 1.06-1.33, p = 0.003). No associations were found between race and literacy. CONCLUSIONS: Wide variations in literacy were noted across age groups. All participants were able to complete the Pediatric PRO-CTCAE, although most 7 year olds (63%) required reading assistance. Those with lower literacy skills were able to understand items suggesting that multiple factors may be involved in comprehension (developmental stage, concentration, vocabulary, or prior health experiences). Risk for falling below expected literacy levels increased with age implying a need for literacy consideration for cancer patients.

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. We evaluated 55 AEs from the PRO-CTCAE library (97 questions) and seven new AEs not in PRO-CTCAE that assess symptom frequency, severity, interference, or presence. Questions were distributed across three forms to reduce burden. Cognitive interviews with retrospective probing were completed in age groups of 13-15 and 16-20 year olds. Proxies were interviewed independently. RESULTS: In general, the 16-20 year olds and the parent proxies were able to understand and complete the PRO-CTCAE and newly designed AE questions. Five PRO-CTCAE terms (bloating of the abdomen, anxiety, flashing lights in front of your eyes, hot flashes, and bed sores) and the wording of the questions about AE severity were challenging for a few adolescents and proxies. The 13-15 year olds had greater challenges completing the PRO-CTCAE. CONCLUSION: This study extends use of the adult PRO-CTCAE for adolescents as young as 16 years and proposes new questions for seven new symptomatic AEs and a parent-proxy version of PRO-CTCAE. Additional testing of the new questions and alternative language for more challenging PRO-CTCAE items is recommended in adults.

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. PROCEDURE: From seven pediatric research hospitals, children/adolescents ages 7-15 years who were diagnosed with cancer and receiving treatment were eligible, along with their parent-proxies. The Pediatric PRO-CTCAE includes 130 questions that assess 62 symptomatic AEs capturing symptom frequency, severity, interference, or presence. Cognitive interviews with retrospective probing were completed with children in the age groups of 7-8, 9-12, and 13-15 years. The children/adolescents and proxies were interviewed independently. RESULTS: Two rounds of interviews involved 81 children and adolescents and 74 parent-proxies. Fifteen of the 62 AE terms were revised after Round 1, including refinements to the questions assessing symptom severity. Most participants rated the PRO-CTCAE AE items as "very easy" or "somewhat easy" and were able to read, understand, and provide valid responses to questions. A few AE items assessing rare events were challenging to understand. CONCLUSIONS: The Pediatric and Proxy PRO-CTCAE performed well among children and adolescents and their proxies, supporting its content validity. Data from PRO-CTCAE may improve symptomatic AE reporting in clinical trials and enhance the quality of care that children receive.

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. The Cooperative Clinical Conference (CCC) was piloted for prelicensure nursing clinical groups as a vehicle to allow students to reflect on their learning and physiology and disease, as it relates to the pediatric patient in the context of the entire plan of care for pediatric patients. METHOD: Participating nursing student clinical groups were allotted 15 to 20 minutes to give group case presentations of de-identified patient scenarios, representative of the patient population on the assigned clinical unit. RESULTS: The CCC as a learning opportunity in the clinical area was rated highly on evaluations by faculty and student participants in terms of their achievement of both learning objectives and satisfaction. CONCLUSION: The CCC represented a feasible and acceptable method of enhanced learning and professional development with and for undergraduate nursing students in the pediatric clinical environment. [J Nurs Educ. 2016; 55(7):416-419.].