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Parents of children in the pediatric cardiac intensive care unit (CICU) are often unprepared for family meetings (FM). Clinicians often do not follow best practices for communicating with families, adding to distress. An interprofessional team intervention for FM is feasible, acceptable, and positively impacts family preparation and conduct of FM in the CICU. We implemented a family- and team-support intervention for conducting FM and conducted a pretest-posttest study with parents of patients selected for a FM and clinicians. We measured feasibility, fidelity to intervention protocol, and parent acceptability via questionnaire and semi-structured interviews. Clinician behavior in meetings was assessed through semantic content analyses of meeting transcripts tracking elicitation of parental concerns, questions asked of parents, and responses to parental empathic opportunities. Logistic and ordinal logistic regression assessed intervention impact on clinician communication behaviors in meetings comparing pre- and post-intervention data. Sixty parents (95% of approached) were enrolled, with collection of 97% FM and 98% questionnaire data. We accomplished > 85% fidelity to intervention protocol. Most parents (80%) said the preparation worksheet had the right amount of information and felt positive about families receiving this worksheet. Clinicians were more likely to elicit parental concerns (adjusted odds ratio = 3.42; 95%CI [1.13, 11.0]) in post-intervention FM. There were no significant differences in remaining measures. Implementing an interprofessional team intervention to improve family preparation and conduct of FM is locally feasible, acceptable, and changes clinician behaviors. Future research should assess broader impact of training on clinicians, patients, and families., (© 2024. The Author(s).)

Background and Objectives: Parents and siblings of very low birth weight, premature infants are at risk for poor mental health outcomes with increased mental health care usage. Knowledge regarding mental health care use patterns could guide interventions., Methods: This retrospective cohort study included US families with commercial insurance coverage from a single carrier. Neonates born at ≤30 weeks' gestational age or with a birth weight <1500 g were identified by insurance claim data between July 1, 2015, and June 30, 2016. Each case neonate family was matched with up to 4 control families., Results: The study included 1209 case and 1884 control neonates (with 134 deaths among only the case neonates [11.1% of cases]); 2003 case and 3336 control parents (mean [SD] age, 34.6 [5.4] years; 2858 [53.5%] female); and 884 case and 1878 control siblings (mean [SD] age, 6.8 [5.5] years; 1375 [49.8%] female). Compared with controls, more case parents used mental health care over the first year after birth hospitalization discharge. Higher usage was observed for bereaved case parents soon after their child's death. A smaller proportion of bereaved case siblings received mental health care compared with controls. Although nonbereaved case parents returned toward the proportion of use observed in controls, nonbereaved case female siblings, bereaved case female and male siblings, and bereaved male parents experienced continued differences., Conclusions: Understanding and meeting the mental health care needs of parents and siblings of very low birth weight premature neonates can be guided by these findings, including elevated and prolonged needs of bereaved parents and siblings., (Copyright © 2024 by the American Academy of Pediatrics.)

Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known., Objective: To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care., Design, Setting, and Participants: A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services., Exposures: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC., Main Outcomes: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100., Results: A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation., Conclusions and Relevance: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.

Recent research shows the importance of hope in the context of life-threatening illness and the end of life for patients and their families. While some patients and family members continue to hope for a cure or extending life, others may develop more complex hopes related to quality of life and making the most of the time left. Clinicians often worry about taking hope away with bad news about the patient's prognosis, but patients and family members often appreciate honesty without losing hope. Clinicians should recognize that hopes in the context of serious, progressive illness may be complex, contradictory, culturally based, and evolve over time. Recent interventions have been developed to support hope for these patients, caregivers, and parents., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Background: Pre-transplant evaluation is mandated by Centers for Medicare and Medicaid Services, but there is wide institutional variation in implementation, and the family experience of the process is incompletely understood. Current literature largely focuses on adult transplant recipients., Methods: This qualitative study begins to fill the knowledge gap about family experience of the pre-transplant evaluation for children through interviews with caregivers at a large pediatric transplant center., Results: Prominent themes heard from caregivers include (1) the pre-transplant evaluation is overwhelming and emotional, (2) prior experiences and background knowledge frame the evaluation experience, and (3) frustration with communication among teams is common., Conclusions: These findings are relevant to efforts by transplant centers to optimize information delivery, minimize concrete barriers, and address healthcare systems issues. A higher resolution version of the Graphical abstract is available as Supplementary information., (© 2022. The Author(s), under exclusive licence to International Pediatric Nephrology Association.)

Care for U.S. children living with serious illness and their families at home is a complex and patchwork system. Improving home-based care for children and families requires a comprehensive, multilevel approach that accounts for and examines relationships across home environments, communities, and social contexts in which children and families live and receive care. We propose a multilevel conceptual framework, guided by Bronfenbrenner's ecological model, that conceptualizes the complex system of home-based care into five levels. Levels 1 and 2 contain patient and family characteristics. Level 3 contains factors that influence family health, well-being, and experience with care in the home. Level 4 includes the community, including community groups, schools, and providers. Level 5 includes the broader regional system of care that impacts the care of children and families across communities. Finally, care coordination and care disparities transcend levels, impacting care at each level. A multilevel ecological framework of home-based care for children with serious illness and families can be used in future multilevel research to describe and test hypotheses about aspects of this system of care, as well as to inform interventions across levels to improve patient and family outcomes.

Context: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management., Objective: To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies., Methods: The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment., Conclusions: Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: To assess parental decision-making preferences when caring for a child with serious illness and to evaluate for an association between preferences and parental trust in physicians, and potential modification of this association by parental anxiety or depression. Methods: We analyzed cross-sectional data from 200 parents of 158 children in the United States who had life-threatening illnesses and whose attending physicians thought that the parents would have to make major medical decision in the next 12 to 24 months. Parents completed measures of decision-making preferences, trust in physicians, anxiety, and depression. Results: Higher reported levels of trust were associated with lower preferences for autonomous decision making (Spearman correlation = -0.24; 95% confidence interval [CI] = -0.36 to -0.01; p  < 0.008). Among parents with higher levels of trust, increasing anxiety scores were associated with decreasing preference for autonomy, whereas among parents with lower levels of trust, increasing anxiety scores showed an increasing preference for autonomy (regression coefficient = -0.01; 95% CI = -0.02 to -0.001; p  ≤ 0.03). Conclusions: Decreasing trust in physicians is associated with a higher preference for autonomous decision making. Parents who have higher levels of anxiety exhibit this association more strongly. Decision support for parents of children with serious illness should use strategies to respect parental decision-making preferences, address potential distrust, and provide mental health support to parents who are anxious or depressed.

Context: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty., Objectives: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress., Methods: Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score., Results: The majority of parents were moderately to severely distressed (69%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone., Conclusions: Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Importance: Despite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members., Objectives: To examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions., Design, Setting, and Participants: This retrospective cohort study included US families with commercial insurance coverage from a single carrier. Children who had 1 of 4 LTCs (substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe neurologic impairment) were identified by a diagnosis in their insurance claim data between July 1, 2015, and June 30, 2016. Each case child and their family was matched with up to 4 control children and their families based on the age of the case and control children. Data were analyzed between August 2020 and March 2021., Exposures: Having a child or sibling with substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe and progressive neurologic impairment., Main Outcomes: Rates of occurrence of health care encounters, physical and mental health diagnoses, and physical and mental health medication prescriptions, identified from insurance claims data, were compared between case and control families using a multivariable negative binomial regression model. The statistical analysis adjusted for observed differences between case and control families and accounted for clustering at the family level., Results: The study included 25 528 children (6909 case children [27.1%] and 18 619 control children [72.9%]; median age, 6.0 years [IQR, 1-13 years]; 13 294 [52.1%] male), 43 357 parents (11 586 case parents [26.7%] and 31 771 control parents [73.3%]; mean [SD] age, 40.4 [8.1] years; 22 318 [51.5%] female), and 25 706 siblings (7664 case siblings [29.8%] and 18 042 control siblings [70.2%]; mean [SD] age, 12.1 [6.5] years; 13 114 [51.0%] male). Overall, case mothers had higher rates of the composite outcome of health care encounters, diagnoses, and prescriptions compared with control mothers (incident rate ratio [IRR], 1.61; 95% CI, 1.54-1.68), as did case fathers compared with control fathers (IRR, 1.55; 95% CI, 1.46-1.64). Sisters of children with LTCs had higher rates of the composite outcome compared with sisters of children without LTCs (IRR, 1.68; 95% CI, 1.55-1.82), as did brothers of children with LTCs compared with brothers of children without LTCs (IRR, 1.70; 95% CI, 1.56-1.85)., Conclusions and Relevance: In this cohort study, mothers, fathers, sisters, and brothers who had a child or sibling with 1 of 4 types of LTCs had higher rates of health care encounters, diagnoses, and medication prescriptions compared with families who did not have a child with that condition. The findings suggest that family members of children with LTCs may experience poorer mental and physical health outcomes. Interventions for parents and siblings of children with LTCs that aim to safeguard their mental and physical well-being appear to be warranted.

Context: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care., Objectives: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals., Methods: A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention., Results: Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice., Conclusion: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Importance: Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report., Objective: To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure., Design, Setting, and Participants: Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children's hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites., Exposures: Analyses were stratified by patients' demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non-mutually exclusive complex chronic condition categories., Main Outcomes and Measures: Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score., Results: Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13)., Conclusions and Relevance: In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care.

Purpose: Parents of children with cancer exhibit high levels of psychological distress. Parents of children with serious illness report religion and spirituality are important coping resources. We sought to describe characteristics of religion, religious coping, social support, and resiliency in parents of children newly diagnosed with cancer and examine associations between psychological distress and self-reported religious coping, religiosity, resiliency, and social support., Patients and Methods: Cross-sectional observational study of 100 parents of 81 unique children recently diagnosed with cancer. Parents provided demographic information and completed measures of psychological distress, importance of religion, religious coping, resiliency, and social support. Patients' type of tumor and intensity of treatment were collected by medical record abstraction., Results: Compared to nationally reported data for adults, parents of children with cancer reported high scores for psychological distress but similar levels of religiosity, religious coping, and resiliency. Negative religious coping (feelings of negativity related to the divine) was associated with higher levels of psychological distress. This effect was most prominent in parents who reported the highest levels of religiosity. Positive religious coping, religiosity, and social support were not associated with levels of psychological distress., Discussion: Findings confirm high levels of distress for parents of children with cancer. Negative religious coping was associated with higher levels of psychological distress but positive religious coping, religiosity, and other coping factors were not found to be significantly associated with distress. Further assessment of negative religious coping to inform interventions to promote resiliency is warranted as they may impact parental decision-making and care., (© 2021 Wiley Periodicals LLC.)

Families of children with medical complexity (CMC) face many types of health-related decisions. These decisions vary in magnitude of consequences, degree of risk, time scale, degree of tradeoffs, degree of uncertainty, degree of linkage with other decisions, and reversibility. There are many influences on decision-making, including evidence, hopes, and values. Primary care pediatricians are in a unique position to assist families of CMC with decision-making. Pediatric clinicians have an opportunity to establish a trusting relationship with a family over time and to understand the family's values, beliefs, and preferences during periods of relative health and stability. This allows primary care pediatricians to support families in decision-making by helping to clarify their values and goals and apply those values to the decision at hand. [Pediatr Ann. 2020;49(11):e473-e477.]., (Copyright 2020, SLACK Incorporated.)

Background: Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses. Objective: To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time. Design: Prospective cohort study. Setting/Subjects: Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia. Measurements: Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months. Results: The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling. Conclusions: Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes.

Background: Currently the most effective treatment for severe obesity in adolescents is weight-loss surgery coupled with lifestyle behavior change. In preparation for weight-loss surgery, adolescents are required to make changes to eating and activity habits (lifestyle changes) to promote long term success. Social media support groups, which are popular among adolescents, have the potential to augment preoperative lifestyle changes. The purpose of this study was to qualitatively assess the perceived role of social media as a support tool for weight-loss, and to identify motivators and constraints to lifestyle changes and social media use in adolescents preparing for weight-loss surgery., Methods: Thematic analysis of social media comments from 13 (3 male, 10 female) adolescents aged 16 ± 1.3 years with a body mass index (BMI) 45 ± 7.3 kg/m 2 enrolled in a weight-management program preparing for bariatric surgery and who participated in a 12-week pilot social media intervention was performed. Participants commented on moderator posts and videos of nutrition, physical activity, and motivation that were shared three to four times per week. Social media comments were coded using NVivo 11.0 to identify recurrent themes and subthemes., Results: 1) Social media provided accountability, emotional support, and shared behavioral strategies. 2) Motivators for lifestyle changes included family support, personal goals, and non-scale victories. 3) Challenges included negative peers, challenges with planning and tracking, and time constraints., Conclusion: Adolescents considering bariatric surgery identified social media as a tool for social support and reinforcement of strategies for successful behavior change. Important motivators and challenges to lifestyle changes were identified.

Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals., Objectives: To describe distinct meanings of the term "uncertainty" that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals., Methods: We conducted a phenomenological qualitative analysis of "uncertainty" as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care., Results: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care., Conclusion: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents., Discussion: Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility., Conclusions: Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.

Context: Parents of seriously ill children hold personal beliefs about what they should do to be good parents. How these beliefs change over time is unknown., Objectives: The objectives of this study were to describe the pattern of Good-Parent Beliefs over time, and determine whether parents' hopeful patterns of thinking, affect, and perceived child's health are associated with changes in beliefs at 12 and 24 months., Methods: Our longitudinal sample included 124 parents of 100 children hospitalized with serious illness. We used latent transition models to classify parents into groups with similar Good-Parent Beliefs during the baseline and follow-up periods and modeled the change in good-parent beliefs over time as a function of covariates using generalized linear mixed models., Results: Two parent belief profiles emerged from the latent transition model: Loved ("Making sure my child feels loved," n = 61 at baseline) and Informed ("Making informed decisions," n = 63 at baseline). At 12 months, 21 parents (20.4%) had moved into the Loved group and no parents transitioned to the Informed group. By 24 months, eight parents transitioned to the Loved group and four to the Informed group (13.04%). Transition into the Loved group was associated with parents' baseline degree of hopeful thinking and positive perceptions of child's health at baseline., Conclusion: Some parents change their parenting priorities over time. Hopeful patterns of thinking and perception of child health appear to predict change. Clinicians should regularly reevaluate Good-Parent Beliefs over time to promote priority-congruent dialogue., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The role of dairy products in obesity treatment for adolescents is unclear. The study purpose was to assess the association between dairy intake and changes in BMI z-score (zBMI) during adolescent obesity treatment., Methods: Observational study nested within a randomized control trial. Linear mixed-effects regression models were adjusted for important non-lifestyle factors then further adjusted for dietary and physical activity variables. In total, 91 adolescents were studied., Results: Each serving of total dairy (β = -0.0054, P < 0.01), unflavored milk (β = -0.012, P < 0.01), reduced fat (β = -0.0078, P < 0.05), and low fat/fat-free products (β = -0.0149, P < 0.01) was associated with a decrease in zBMI over 12 months. These associations were no longer significant after adjustment for other dietary and physical activity factors. Sugar-sweetened beverage intake was inversely associated with intake of total dairy (β = -0.186, P = 0.001), unflavored milk (β = -0.115, P = 0.003) and low fat/fat-free dairy (β = -0.125, P = 0.001)., Conclusions: Intakes of total dairy, unflavored milk, reduced fat dairy and low fat/fat-free dairy products are associated with improved obesity treatment outcomes among adolescents. This could be due to co-occurring healthy lifestyle behaviors or to replacement of other food and beverages associated with obesity, such as sugar-sweetened beverages, by dairy products., (© The Author(s) 2018. Published by Oxford University Press on behalf of Faculty of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: Serious pediatric illness places great stress on families. Parents who learn coping skills may better manage these stressors. This study sought to develop and refine a stress coping intervention for parents of hospitalized children, assess the intervention acceptability among these parents, and gather preliminary data on stress, negative and positive affect, anxiety, depression, and self-efficacy., Methods: We conducted an observational study in 2 phases, enrolling parents of children who were inpatients with serious illness, 10 in Phase 1 and 40 in Phase 2. All parents completed at baseline measures of stress and psychological well-being and were introduced to the Coping Kit for Parents. Follow-up interviews were conducted at 1 week (all parents) and 1 month (Phase 2 parents only) regarding the acceptability of the intervention., Results: At baseline, parents reported that stressful situations were frequent (mean = 30.6, standard deviation [SD] = 6.8) and difficult (mean = 26.2, SD = 7.1) and revealed elevated levels of negative affect (mean = 27.3, SD = 7.7), depression (mean = 8.5, SD = 3.7), and anxiety (mean = 11.3, SD = 3.1) and moderate levels of self-efficacy related to their child's illness (mean = 3.3, SD = 0.5). The majority of parents used the kit regularly and on a scale of 1 to 7 agreed that the kit was helpful (mean = 6.0, SD = 0.9), interesting (mean = 5.7, SD = 1.3), practical (mean = 5.7, SD = 1.4), enjoyable (mean = 6.0, SD = 1.3), and they would recommend it to other parents (mean = 6.4, SD = 0.9)., Conclusions: The Coping Kit for Parents is an acceptable stress management intervention that could be made available to parents of children with serious illness at pediatric hospitals with minimal staff training or time commitment., (Copyright © 2018 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Purpose: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach., Methods: We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration., Results: The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices., Conclusions: The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.

Context: Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns., Objectives: To explore how pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation., Methods: We conducted semistructured qualitative interviews with pediatric oncology providers at a large children's hospital. Interviews were audio-recorded, transcribed, and analyzed by two coders using a modified grounded theory approach., Results: We interviewed 16 providers (10 physicians, one nurse practitioner, two social workers, two psychologists, and one child life specialist). Three core perceptions emerged: 1) the PPCS offers a diverse range of valuable contributions to the care of children with advancing cancer; 2) providers held favorable opinions about the PPCS owing to positive interactions with individual palliative care specialists deemed extraordinarily emotionally skilled; and 3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation., Conclusion: The pediatric oncology providers in our study held a highly favorable opinion about their institution's PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of palliative care in this population may benefit from a focus on the emotional experiences of providers., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time., Methods: In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit., Results: One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents., Conclusions: The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

Background: Severe obesity in adolescents has deleterious physical and psychological complications necessitating frequent multi-disciplinary clinic visits. Greater treatment engagement has been equated with weight-loss. However, traditional medical weight-loss programs for adolescents have high attrition rates. Social media is widely used by adolescents and may enhance medical weight management engagement and success., Objective: The first objective was to examine the acceptability and feasibility of using a private social media group as an adjunct to medical weight management in youth ages 14 to 20 years with severe obesity [body mass index (BMI) ≥ 35 kg/m2]. The second objective was to pilot test the use of social media to improve treatment engagement and decrease attrition rates., Methods: In this single arm, 12 week pre-post study, participants attended individual clinic visits and participated in a moderated private social media group that received nutrition, exercise, and behavior change social media communications or "posts" 3 to 4 times/week. Youth commented and/or liked posts from the moderator and each other. Social media engagement was measured with the number of likes and comments on social media. Clinic attrition was compared, measuring clinic visit attendance 12 weeks prior, during, and after the intervention with mixed linear regression models. Correlations of social media engagement with changes from baseline for BMI, BMI-z score, and psychosocial measures were fit., Results: All 13 enrolled youth completed the study and reported that the group was enjoyable, helpful, reinforced their weight management program, and would recommend using social media to support other youth. The pilot trial was acceptable and feasible. Youth mean weekly engagement (likes + comments) in social media was greater than once a day (8.6 ±3.6). Compared to 12 weeks prior to the intervention, there was no significant decrease in clinic visit attendance at the end of the intervention (M=.231, P=.69) or 12 weeks at the conclusion of the intervention (M=.589, P=.28). Increased social media comments correlated with weight change (r=-.633, P=.04)., Conclusions: This pilot trial demonstrated that the use of social media as an adjunct to medical weight management was feasible and acceptable to adolescents with severe obesity. Based upon these preliminary findings, social media may be an effective way to mitigate attrition from obesity treatment programs, and improve health outcomes in this high-risk population., (©Elizabeth Prout Parks, Renee' H Moore, Ziyi Li, Chanelle T Bishop-Gilyard, Andrew R Garrett, Douglas L Hill, Yasmeen P. Bruton, David B Sarwer. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 19.03.2018.)

Context: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time., Objectives: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time., Methods: Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately., Results: The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance., Conclusion: Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The North American non-surgical standard of care for adolescent idiopathic scoliosis (AIS) includes observation and bracing, but not exercises. Schroth physiotherapeutic scoliosis-specific exercises (PSSE) showed promise in several studies of suboptimal methodology. The Scoliosis Research Society calls for rigorous studies supporting the role of exercises before including it as a treatment recommendation for scoliosis., Objectives: To determine the effect of a six-month Schroth PSSE intervention added to standard of care (Experimental group) on the Cobb angle compared to standard of care alone (Control group) in patients with AIS., Methods: Fifty patients with AIS aged 10-18 years, with curves of 10°-45° and Risser grade 0-5 were recruited from a single pediatric scoliosis clinic and randomized to the Experimental or Control group. Outcomes included the change in the Cobb angles of the Largest Curve and Sum of Curves from baseline to six months. The intervention consisted of a 30-45 minute daily home program and weekly supervised sessions. Intention-to-treat and per protocol linear mixed effects model analyses are reported., Results: In the intention-to-treat analysis, after six months, the Schroth group had significantly smaller Largest Curve than controls (-3.5°, 95% CI -1.1° to -5.9°, p = 0.006). Likewise, the between-group difference in the square root of the Sum of Curves was -0.40°, (95% CI -0.03° to -0.8°, p = 0.046), suggesting that an average patient with 51.2° at baseline, will have a 49.3° Sum of Curves at six months in the Schroth group, and 55.1° in the control group with the difference between groups increasing with severity. Per protocol analyses produced similar, but larger differences: Largest Curve = -4.1° (95% CI -1.7° to -6.5°, p = 0.002) and [Formula: see text] (95% CI -0.8 to 0.2, p = 0.006)., Conclusion: Schroth PSSE added to the standard of care were superior compared to standard of care alone for reducing the curve severity in patients with AIS., Trial Registration: NCT01610908., Competing Interests: The authors have declared that no competing interests exist.

Background and Objectives: Pediatric inpatients with communication impairment may experience inadequate pain and symptom management. Research regarding potential variation in care among patients with and without communication impairment is hampered because existing pediatric databases do not include information about patient communication ability per se, even though these data sets do contain information about diagnoses and medical interventions that are probably correlated with the probability of communication impairment. Our objective was to develop and evaluate a classification model to identify patients in a large administrative database likely to be communication impaired., Methods: Our sample included 236 hospitalized patients aged ≥12 months whose ability to communicate about pain had been assessed. We randomly split this sample into development (n = 118) and validation (n = 118) sets. A priori, we developed a set of specific diagnoses, technology dependencies, procedures, and medications recorded in the Pediatric Health Information System likely to be strongly associated with communication impairment. We used logistic regression modeling to calculate the probability of communication impairment for each patient in the development set, assessed the model performance, and evaluated the performance of the 11-variable model in the validation set., Results: In the validation sample, the classification model showed excellent classification accuracy (area under the receiver operating characteristic curve 0.92; sensitivity 82.6%; 95% confidence interval, 74%-100%; specificity 86.3%; 95% confidence interval, 80%-97%). For the complete sample, the predicted probability of communication impairment demonstrated excellent calibration with the observed communication impairment status., Conclusions: Hospitalized pediatric patients with communication impairment can be accurately identified in a large hospital administrative database., (Copyright © 2016 by the American Academy of Pediatrics.)

Purpose: To determine the reliability of a prognostic curve progression model and the role of the quantity and quality of brace wear for adolescent idiopathic scoliosis (AIS) brace treatment., Methods: To develop a curve progression model for full-time AIS brace treatment, 20 AIS subjects (Group 1) prescribed full-time thoracolumbar sacral orthosis (TLSO) were monitored and followed for 2 years beyond maturity. The developed curve progression model was: curve progression (in degrees) = 33 + 0.11 × Peterson risk (%) - 0.07 in-brace correction (%) - 0.45 × quality (%) - 0.48 × quantity (%) + 0.0062 × quantity × quality. To validate the model, 40 new (test) subjects (Group 2) who met the same inclusion criteria and used the same type of monitors, were monitored and followed for 2 years after bracing., Results: For the 40 test subjects (Group 2), the average in-brace correction was 40 ± 22 %. The average quantity and quality of the brace wear were 56 ± 19 and 55 ± 17 %, respectively. Twelve subjects (30 %) progressed of which 10 subjects (25 %) required surgery and 28 subjects (70 %) showed no progression. The accuracy of the model to determine which patients would progress was 88 % (35/40) which was better than the Peterson's risk model (68 %; 26/40) alone. Patients who had the combined quantity times the quality over a threshold 43 % had a success treatment rate of 95 %., Conclusions: This study showed the prognostic model of brace treatment outcome on AIS patients treated with full-time TLSO was reliable. Both the quantity and quality of the brace wear were important factors in achieving successful brace treatment.

Background: The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings., Objective: We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology would be comparable to the general population of children their age; and (2) higher family functioning scores would be associated with lower clinical scores and higher adaptive scores for these siblings., Methods: We conducted an observational study with families in which a patient receiving palliative care had one or more siblings between the ages of 6 and 11. Parents completed the Behavioral Assessment System for Children, Second Edition (BASC-2) to assess the siblings' psychological well-being and the Family Assessment Device (FAD) to assess the family environment., Results: Twenty-four parents reported data for 30 siblings. Only three siblings scored in the clinical range on a BASC-2 composite clinical scale, and 11 siblings scored in the at-risk range on one or more composite scales. Higher FAD scores predicted significantly higher externalization composite clinical scores (7.54, 95% CI: 1.12, 13.97, p < 0.05) and significantly higher behavioral composite scores (7.88, 95% CI: 1.55, 14.21, p < 0.05)., Discussion: Siblings of pediatric palliative care patients are not experiencing lower psychological well-being than the general population. The prediction that a positive family environment would be associated with higher levels of psychological health was supported.

Background: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child., Objective: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'., Method: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians., Results: The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively)., Conclusion: Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children., (© 2013 John Wiley & Sons Ltd.)

Purpose: The objectives of this preliminary study were to assess the reliability and accuracy of ultrasound (US) for measuring coronal curvature with and without the aid of a previous radiograph, and to evaluate the ability of US to detect curve progression in adolescent idiopathic scoliosis (AIS) patients., Methods: Four raters measured 20 AIS US images twice at one-week intervals. Intra-rater reliability and correlation with radiograph were investigated with (rater 1) and without (raters 2-4) the aid of a previous radiograph. The center of lamina (COL) method was used to approximate the Cobb angle., Results: Thirty-six curves were identified. All raters showed high intra-rater reliability (ICC[2,1] >0.80). With the aid of a previous radiograph, rater 1 showed higher correlation with radiograph (ICC[2,1] = 0.86), better standard error of measurement (SEM = 2.2°), and improved error index of selecting end-vertebrae (EI = 1.34), but no statistical improvement of intra-rater reliability (p > 0.05). For rater 2-4, the range of the ICC[2,1] values between US and radiograph measurements, the SEM value, and the range of the EI values were 0.70°-0.72°, 3.3°, and 1.65°-2.36°, respectively. Specificity and sensitivity of US for detecting curve progression were 0.91 and 0.83, respectively., Conclusions: Using a previous radiograph as a measurement aid helped the user to measure coronal curvature from US images, and improved the accuracy of end-vertebrae selection. US showed high sensitivity and specificity for detecting curve progression, indicating that US may be a suitable, radiation-free alternative for monitoring patients with AIS who have mild or moderate curves.

Study Design: Retrospective reliability study of the coronal curvature measurement on ultrasound (US) imaging in adolescent idiopathic scoliosis (AIS)., Objectives: To determine the intra- and inter-rater reliability and validity of the coronal curvature measurements obtained from US images., Summary of Background Data: Cobb angle measurements on radiographs are the usual method to diagnose and monitor the progression of scoliosis. Repeated ionizing radiation exposure is a frequent concern of patients and their families. Use of US imaging method to measure coronal curvature in children who have idiopathic scoliosis has not been clinically validated., Methods: The researchers scanned 26 subjects using a medical 3-dimensional US system. Spinal radiographs were obtained on the same day from the local scoliosis clinic. Three raters used the center of lamina method to measure the coronal curvature on the US images twice 1 week apart. The raters also measured the Cobb angle on the radiographs twice. Intra- and inter-rater reliability of the coronal curvature measurement from the US images was analyzed using intra-class correlation coefficients. The correlation coefficient of the US coronal curvature measurements was compared with the Cobb angles., Results: The intra-class correlation coefficient (2,1) values of intra- and inter-rater reliability on the US method were greater than 0.80. Standard error of measurement on both of the intra- and inter-rater US methods was less than 2.8°. The correlation coefficient between the US and radiographic methods ranged between 0.78 and 0.84 among 3 raters., Conclusions: The US method illustrated substantial intra- and inter-rater reliability. The measurement difference between radiography and the US method was within the range of clinically acceptable error (5°). The US method may be considered a radiation-free alternative to assess children with scoliosis of mild to moderate severity., (Copyright © 2015 Scoliosis Research Society. Published by Elsevier Inc. All rights reserved.)

Importance: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support., Objective: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes., Design, Setting, and Participants: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness., Main Outcomes and Measures: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics., Results: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions., Conclusions and Relevance: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

Objective: Pediatric inpatients may be at risk for inadequate pain management if they are unable to communicate effectively because of age, physical or cognitive impairment, or medical procedures. We conducted a point prevalence study to estimate the proportion of inpatients at a children's hospital who have difficulty communicating to hospital staff., Methods: We obtained nurse reports of ability to communicate for all inpatients aged ≥12 months in a pediatric hospital. Demographic information was obtained from the medical record., Results: Questionnaires were completed for 254 inpatients. Forty percent of inpatients had some difficulty communicating, and 69% had experienced pain during the hospitalization. Patient ability to communicate was not related to experiencing pain (χ(2) test, P = .30) or effectiveness of pain management (χ(2) test, P = .80) but was associated with difficulty communicating about pain and nurses needing help from the caretaker to communicate with the patient (χ(2) tests, Ps < .001)., Conclusions: A substantial proportion of inpatients aged ≥12 months at a large children's hospital had difficulties communicating effectively and experienced pain during hospitalization. These communication difficulties were not associated with nurse reports of the effectiveness of pain management. However, patients who had difficulties communicating in general were also more likely to have difficulty communicating about pain specifically, and nurses were more likely to need help from the caregiver to understand these patients. Future directions include identifying which conditions, procedures, and medications are associated with inability to communicate., (Copyright © 2014 by the American Academy of Pediatrics.)

Study Design: A reliability analysis of Cobb angle, vertebral rotation (VR), and spinous process angle (SPA) measurements in adolescent idiopathic scoliosis., Objective: To determine the intra- and interobserver reliability of semi-automated digital radiograph measurements., Summary of Background Data: Cobb angle measurements on posteroanterior radiographs are commonly used to determine the severity of scoliosis. Vertebral rotation helps assess scoliosis 3-dimensionally and has a role in predicting curve progression. Recent studies have shown that the spinous process angle is a useful parameter in assessing scoliosis when using ultrasound imaging. Because the reliability of SPA measurements on radiographs has yet to be determined, it is important to compare the reliability of these 3 parameters (Cobb angle, VR, and SPA) using a computer assisted semi-automated method., Methods: Sixty posteroanterior radiographs of patients with adolescent idiopathic scoliosis were obtained and measured twice by 3 observers who were blinded to their previous measurements, using an in-house developed program. Measurements were obtained using a semi-automated method to minimize variability resulting from observer reliability. The intra- and interobserver reliabilities were analyzed using intra-class correlation coefficients (ICCs) as well as Bland-Altman's bias and limits of agreement., Results: Over 350 (intra) and 90 (inter) sets of curves with an average Cobb angle of 26° ± 9° (range, 10° to 44°) were compared for each parameter. Intra-observer reliabilities for each parameter were excellent (ICC [2,1] , .82; 1.00), with mean absolute differences under 3° between most measurements. Interobserver reliability (ICC [2,1] , .72; .95) was mostly good to excellent, with mean absolute differences ranging from 2.0° to 5.6°., Conclusions: Both the intra- and interobserver assessment of the Cobb, VR, and SPA from the semi-automated measurements had clinically acceptable reliability ranges and may be considered for clinical implementation. Additional studies will be conducted to determine the accuracy and sensitivity to change of these scoliosis severity measurements., (Copyright © 2014 Scoliosis Research Society. Published by Elsevier Inc. All rights reserved.)

Background: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling., Discussion: Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care., Summary: The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.

Many of the aches and pains of adults are the result of the long-term effects of bad posture or body misalignment. Postural kyphosis in adolescence, which is an excessive rounding of the upper spine, may be one of the effects of poor standing and sitting habits. A smart garment, consisting of a harness and two data-sensor loggers, was developed to monitor and provide vibration feedback to wearers to improve their posture during daily activities. Laboratory tests verified that the garment could provide an accuracy of 2 ± 2° during static measurement and 3 ± 2° during stable or slowly changing posture activities and 4 ± 4° during rapidly changing posture activities. Four volunteers wore the system for 3 h per day and for 4 consecutive days. The feedback was provided on the last 2 days and the kyphotic angle reduced by 8 ± 1° and 8 ± 2° on the last 2 days, respectively. Although the long-term effects of reminding the subjects' posture is still not clear, a short-term result shows promise that the smart garment may be able to improve the kyphosis.

Study Design: Development of a computer-aided Cobb measurement method and evaluation of its reliability., Objectives: To reduce the variability of Cobb angle measurement by developing the computer-aided method and to investigate if the developed method is sensitive to observer skill levels or experiences., Summary of Background Data: Therapeutic decisions for scoliosis heavily rely on the Cobb angle measured from consecutive radiographs. The manual Cobb measurement is subject to human errors. The observer error is 3 to 10 degrees resulted from different end-vertebrae selection and/or manually drawing variable best-fit lines to the endplates of the end-vertebrae., Methods: A fussy Hough transform technique was used to develop a computer-aided method to detect the vertebral endplates. The Cobb angle, upper end-vertebra, and lower end-vertebra were then measured automatically. The computer-aided method was tested twice by each of 3 observers in 84 posteroanterior radiographs from patients with adolescent idiopathic scoliosis. The intraobserver and interobserver errors were analyzed., Results: Both the intraobserver and interobserver reliability analyses resulted in the intraclass correlation coefficients higher than 0.9 for the Cobb angle. The average intraobserver and interobserver errors were less than 3 degree for the Cobb angle, and less than 0.3 levels for both the upper and lower end-vertebral identification. There were no significant differences in the measurement variability between groups of curve location (thoracic, thoracolumbar, and lumbar), curve direction (right and left), curve magnitude (curves less than 25 degree, between 25 and 45 degrees, and more than 45 degree), and observer experience (experienced observer and inexperienced observers)., Conclusions: Compared with the documented results, variability of the Cobb measurement is reduced by using the developed computer-aided method. This method can help orthopedic surgeons measure the Cobb angle more reliably during scoliosis clinics.

In order to reduce the observer variability in radiographic scoliosis assessment, a computer-aided system was developed. The system semi-automatically measured the Cobb angle and vertebral rotation on posteroanterior radiographs based on Hough transform and snake model, respectively. Both algorithms were integrated with the shape priors to improve the performance. The system was tested twice by each of three observers. The intraobserver and interobserver reliability analyses resulted in the intraclass correlation coefficients higher than 0.9 and 0.8 for Cobb measurement on 70 radiographs and rotation measurement on 156 vertebrae, respectively. Both the Cobb and rotation measurements resulted in the average intraobserver and interobserver errors less than 2 degrees and 3 degrees , respectively. There were no significant differences in the measurement variability between groups of curve location, curve magnitude, observer experience, and vertebra location. Compared with the documented results, measurement variability is reduced by using the developed system. This system can help orthopedic surgeons assess scoliosis more reliably.

To reduce variability of Cobb angle measurement for scoliosis assessment, a computerized method was developed. This method automatically measured the Cobb angle on spinal posteroanterior radiographs after the brightness and the contrast of the image were adjusted, and the top and bottom of the vertebrae were selected. The automated process started with the edge detection of the vertebra by Canny edge detector. After that, the fuzzy Hough transform was used to find line structures in the vertebral edge images. The lines that fitted to the endplates of vertebrae were identified by selecting peaks in Hough space under the vertebral shape constraints. The Cobb angle was then calculated according to the directions of these lines. A total of 76 radiographs were respectively analyzed by an experienced surgeon using the manual measurement method and by two examiners using the proposed method twice. Intraclass correlation coefficients (ICC) showed high agreement between automatic and manual measurements (ICCs > 0.95). The mean absolute differences between automatic and manual measurements were less than 5 degrees . In the interobserver analyses, ICCs were higher than 0.95, and mean absolute differences were less than 5 degrees . In the intraobserver analyses, ICCs were 0.985 and 0.978, respectively, for each examiner, and mean absolute differences were less than 3 degrees . These results demonstrated the validity and reliability of the proposed method.

Little research has been conducted to examine the influence of exposure to televised sexual content on adolescent sexuality or how parental intervention may reduce negative effects of viewing such content. This study uses self-report data from 1,012 adolescents to investigate the relations among exposure to sexually suggestive programming, parental mediation strategies, and three types of adolescent sexuality outcomes: participation in oral sex and sexual intercourse, future intentions to engage in these behaviors, and sex expectancies. As predicted, exposure to sexual content was associated with an increased likelihood of engaging in sexual behaviors, increased intentions to do so in the future, and more positive sex expectancies. Often, parental mediation strategies were a significant factor in moderating these potential media influences.

Choosing the most suitable treatment for scoliosis relies heavily on accurate and reproducible Cobb angle measurement from successive radiographs. The objective is to reduce variability of Cobb angle measurement by reducing user intervention and bias. Custom software to increase automation of the Cobb angle measurement from posteroanterior radiographs was developed using active shape models. Validity and reliability of the automated system against a manual and semiautomated measurement method was conducted by two examiners each performing measurements on three occasions from a test set (N = 22). A training set (N = 47) of radiographs representative of curves seen in a scoliosis clinic was used to train the software to recognize vertebrae from T4 to L4. Images with a maximum Cobb angle between 20 degrees and 50 degrees , excluding surgical cases, were selected for training and test sets. Automated Cobb angles were calculated using best-fit slopes of the detected vertebrae endplates. Intraclass correlation coefficient (ICC) and standard error of measurement (SEM) showed high intraexaminer (ICC > 0.90, SEM 2 degrees -3 degrees ) and interexaminer (ICC > 0.82, SEM 2 degrees -4 degrees ), but poor intermethod reliability (ICC = 0.30, SEM 8 degrees -9 degrees ). The automated method underestimated large curves. The reliability improved (ICC = 0.70, SEM 4 degrees -5 degrees ) with exclusion of the four largest curves (>40 degrees ) in the test set. The automated method was reliable for moderate-sized curves, and did detect vertebrae in larger curves with a modified training set of larger curves.

The effects of parental attitudes, practices, and television mediation on adolescent sexual behaviors were investigated in a study of adolescent sexuality and media (N=887). Confirmatory factor analyses supported an eight-factor parenting model with television mediation factors as constructs distinct from general parenting practices. Logistic regressions indicated that adolescents reporting greater parental disapproval and limits on viewing at Wave 1 were less likely to initiate oral sex between Waves 1 and 2. Adolescents who reported more sexual communication with parents were more likely to initiate oral sex. Results for vaginal intercourse were similar to those for oral sex. Co-viewing was a significant negative predictor of initiation of sexual behavior. Parental attitudes and television mediation can delay potentially risky adolescent sexual behaviors.

Purpose: The current study examined adolescent conceptualizations of virginity and abstinence and whether differences in adolescent definitions of these terms differed by age, gender, ethnicity, and sexual experience., Methods: A series of logistic regressions were conducted to examine whether gender, age, ethnicity, and sexual experience predicted whether adolescents believed that an individual was still a virgin or abstinent after engaging in genital touching, oral sex, vaginal intercourse, or anal sex., Results: Findings indicated that loss of virginity was linked primarily with vaginal and anal intercourse, while a greater proportion of adolescents attributed a loss of abstinence to other behaviors such as genital touching and oral sex as well. Sexual experience was the strongest predictor of how adolescents defined virginity and abstinence., Conclusions: Significant differences exist in youths' definitions of abstinence and virginity. This suggests that additional attention is needed to ensure a common understanding of these terms to achieve successful sexual education and prevention programs.