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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. [ABSTRACT FROM AUTHOR]

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 [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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.]. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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/m2 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 (z BMI) 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

In this article, the authors discuss hope, therapeutic honesty and adaptation in the midst of dying and death. Topics include identification of short-comings in the care of dying patients; mishandling of negative ethical and clinical repercussions for the care that patients with serious illness receive; and connection between denial and acceptance of the ultimately personally fatal consequence of patient condition.

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 (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: [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The article presents a study which determines the problems and hopes reported by parents and physicians of children receiving palliative care. The researchers detail the study methodology to observe concordance between participants and to calculate the most common problem domains. It suggests that asking parents and physicians to discuss the problems and hopes may help provide a straightforward means to improve the quality of shared and informed decision making for critically ill children.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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° and 50°, 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°–3°) and interexaminer (ICC > 0.82, SEM 2°–4°), but poor intermethod reliability (ICC = 0.30, SEM 8°–9°). The automated method underestimated large curves. The reliability improved (ICC = 0.70, SEM 4°–5°) with exclusion of the four largest curves (>40°) 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. [ABSTRACT FROM AUTHOR]

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. Coviewing was a significant negative predictor of initiation of sexual behavior. Parental attitudes and television mediation can delay potentially risky adolescent sexual behaviors. [ABSTRACT FROM AUTHOR]

Two annual content analyses of programming from the 2001-2002 and 2002-2003 television seasons (n = 1,276 and 1,439 programs, respectively) were conducted to assess the presence of behaviors and verbal messages related to the sexuality of gays, lesbians, and bisexuals. Sexual content associated with nonheterosexuals was found in about 15% of programs overall; however, rates of occurrence within episodes were low. Of 14 genres, only movies and variety/comedy shows had substantial percentages of programs that contained nonheterosexual content. Programs on commercial broadcast networks were less likely to have nonheterosexual content than those on cable networks, especially those on premium cable movie networks. Implications of the continued lack of attention to sexual minorities are discussed for both heterosexual and nonheterosexual viewers. [ABSTRACT FROM AUTHOR]

An abstract of the article "Brace treatment for adolescent idiopathic scoliosis-Protocols of the Canadian Spinal Deformity Study Group Surgeons," by Douglas L. Hill and colleagues is presented.