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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. [ABSTRACT FROM AUTHOR]

Context: Family meetings are encouraged in the pediatric cardiac intensive care unit (CICU) with the expectation of supporting parental shared decision-making (SDM). However, they often fall short of this goal. Additionally, interprofessional team and family meetings are dominated by input from physicians, under-utilizing the skillset of the full clinical team.Objectives: 1) To determine feasibility of a codesign process to optimize the preparation of the interprofessional team and parents for conducting SDM-oriented family meetings in the CICU, and 2) to describe the resulting elements of the intervention including new support documents for the team and family to prepare for the meeting, team member roles in the meeting, and optimization of communication skills.Methods: Experience-based codesign was used with CICU clinicians and parents of children hospitalized in the CICU to develop an intervention at a single institution. Sessions were audio recorded and transcribed and analyzed using modified grounded theory. Participants were surveyed about their engagement in the codesign process to assess feasibility.Results: Fifteen professionals and six parents enrolled in the codesign and endorsed engagement in the process and importance of the intervention elements. Participants identified the benefit of complementary parent and team preparation for family meetings noting five distinct types of meetings that occurred frequently. Documents, processes, and skills training were developed to improve interprofessional teamwork regarding shared decision making and support of parents in family meetings.Conclusion: A codesign of an intervention with clinicians and parents in the CICU is a feasible and resulted in an intervention with broad support among clinicians in the CICU. [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]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [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]

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. [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]

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. [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]

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]

This article analyzes key factors affecting transboundary water cooperation in the Brahmaputra River basin at multiple scales. The analysis of multi-track diplomacy reaffirms the potential of actor-inclusive approaches, arguing for a need to go beyond purely focusing on formal legal norms and consider the possibilities of cultural norms of informal processes of cooperation. Various ‘windows of opportunity’ exist in the current phase of the Brahmaputra basin’s development, leading to exploration of a Zone of Possible Effective Cooperation, arising from the effort to scale up multi-track initiatives as well as broader geo-political-economic changes happening across and beyond the basin. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Orthodox approaches to managing Himalayan rivers endorse a singular focus on water as a resource to be harnessed for national security and economic progress, as epitomised by the proposed acceleration of large-scale hydropower construction in the Brahmaputra basin. In reality, existing large-scale hydropower development in the region frequently involves corruption, environmental destruction and forced displacement. This paper argues for an alternative approach to understanding the role of water in India's extractive zones within and beyond the boundaries of the nation, utilising the notions of ‘embeddedness’, ‘hydro-informality’ and ‘rescaling politics’. It is argued that reframing the river in this way can open up space for more just and sustainable practices. [ABSTRACT FROM PUBLISHER]

CONTEXT: Parents may experience psychological distress when a child is acutely hospitalized, which can negatively affect child outcomes. Interventions designed to support parents' coping have the potential to mitigate this distress. OBJECTIVE: To describe interventions designed to provide coping support to parents of hospitalized children and conduct a meta-analysis of coping support intervention outcomes (parent anxiety, depression, and stress). DATA SOURCES: We searched Pubmed, Embase, PsycINFO, Psychiatry Online, and Cumulative Index to Nursing and Allied Health Literature from 1985 to 2016 for English-language articles including the concepts "pediatric," "hospitalization," "parents," and "coping support intervention." STUDY SELECTION: Two authors reviewed titles and abstracts to identify studies meeting inclusion criteria and reviewed full text if a determination was not possible using the title and abstract. References of studies meeting inclusion criteria were reviewed to identify additional articles for inclusion. DATA EXTRACTION: Two authors abstracted data and assessed risk of bias by using a structured instrument. RESULTS: Initial searches yielded 3450 abstracts for possible inclusion. Thirty-two studies met criteria for inclusion in the systematic review and 12 studies met criteria for inclusion in the meta-analysis. The most commonly measured outcomes were parent depression, anxiety, and stress symptoms. In meta-analysis, combined intervention effects significantly reduced parent anxiety and stress but not depression. Heterogeneity among included studies was high. LIMITATIONS: Most included studies were conducted at single centers with small sample sizes. CONCLUSIONS: Coping support interventions can alleviate parents' psychological distress during children's hospitalization. More evidence is needed to determine if such interventions benefit children. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Literature on impact assessment and involuntary displacement mostly explains the impacts that might occur or have occurred on the local communities during and after involuntary displacement induced by development projects. However, there is only very limited research that considers the impacts local communities experience during the pre-implementation phase of the project. Our research attempts to highlight the impacts caused by large-scale projects trapped in a long pre-implementation phase and it seeks to explain the factors that intensify the impacts on affected communities. The research is based on a case study analysis of the West Seti Hydropower Project, a proposed dam in Far-Western Nepal. We argue that an adequate understanding of the impacts that occur during the pre-implementation phase of large-scale development projects is crucial to addressing problems related to displacement and resettlement. Since most of the problems of involuntary displacement begin during the pre-implementation phase, if this phase is not properly understood and its issues addressed, there will be long-term impacts on people, community and overall development processes. [ABSTRACT FROM PUBLISHER]

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.

The development of new biological and chemical instruments for research and diagnostic applications is often slowed by the cost, specialization, and custom nature of these instruments. New instruments are built from components that are drawn from a host of different disciplines and not designed to integrate together, and once built, an instrument typically performs a limited number of tasks and cannot be easily adapted for new applications. Consequently, the process of inventing new instruments is very inefficient, especially for researchers or clinicians in resource-limited settings. To improve this situation, we propose that a family of standardized multidisciplinary components is needed, a set of “building blocks” that perform a wide array of different tasks and are designed to integrate together. Using these components, scientists, engineers, and clinicians would be able to build custom instruments for their own unique needs quickly and easily. In this work we present the foundation of this set of components, a system we call Multifluidic Evolutionary Components (MECs). “Multifluidic” conveys the wide range of fluid volumes MECs operate upon (from nanoliters to milliliters and beyond); “multi” also reflects the multiple disciplines supported by the system (not only fluidics but also electronics, optics, and mechanics). “Evolutionary” refers to the design principles that enable the library of MEC parts to easily grow and adapt to new applications. Each MEC “building block” performs a fundamental function that is commonly found in biological or chemical instruments, functions like valving, pumping, mixing, controlling, and sensing. Each MEC also has a unique symbol linked to a physical definition, which enables instruments to be designed rapidly and efficiently using schematics. As a proof-of-concept, we use MECs to build a variety of instruments, including a fluidic routing and mixing system capable of manipulating fluid volumes over five orders of magnitude, an acid-base titration instrument suitable for use in schools, and a bioreactor suitable for maintaining and analyzing cell cultures in research and diagnostic applications. These are the first of many instruments that can be built by researchers, clinicians, and students using the MEC system. [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.

The period following the election of the National government in 2008 has been controversial for Aotearoa New Zealand's aid programme for a number of reasons. This article examines changes in funding modalities and other aspects of non-governmental organisation (NGO)-government relations as the sites of contested philosophies that surround aid and development discourse. In focusing on the introduction of the Sustainable Development Fund in 2010, the article argues that this shift has generated significant uncertainty among the aid community and may ultimately undermine many of the relationships NGOs previously enjoyed with partners in the Global South. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This article considers numerical simulations of the ventilation environment within a large 300 m indoor military firing range. The range tunnel is 5.5 m wide ×4.3 m tall ×300 m long. The tunnel is preceded by a large armament room that permits tracked and wheeled vehicles to fire weapons downrange. Combusted gases and particles within the range have been observed to stagnate and obscure the range even after firing short automatic bursts. Computations were performed for existing configurations of supply and exhaust vents, barriers and doors to compare with actual flow measurements made within the range. The numerical model was found to represent the existing flows quite well, so the model was then used to investigate alternate flow configurations. [ABSTRACT FROM AUTHOR]

Objectives: Documentation and analysis of adverse neurological and chest symptoms in a large single centre series of sclerotherapy treatments. Method: In this retrospective study, patient-reported adverse events occurring during liquid or foam sclerotherapy were recorded over a 30 month period and subsequently analyzed. The relevant patient records were reviewed to determine patient characteristics, treatment details and results of subsequent investigations. Results: A total of 1744 ultrasound guided sclerotherapy treatments were performed during the study period. Almost all treatments were done with air-based sodium tetradecyl sulphate foam. During the same time period, 6504 direct vision surface vein sclerotherapy treatments were completed. Approximately 1/4 of these utilized air-based foam in varying concentrations. There were 14 adverse events in 14 patients involving neurological or chest symptoms for an incidence of 0.17%. Five patients injected with foam complained of isolated chest discomfort, tightness or shortness of breath. Nine patients reported various brief neurological symptoms. These events occurred with both liquid and foam, although the majority involved foam. More neurological events were associated with direct vision sclerotherapy of smaller superficial veins than with ultrasound guided injection of intrafascial truncular veins. Seven patients who experienced neurological symptoms had a history of migraine. Five of the patients who had neurological events were investigated for right to left shunts and found to be positive. Conclusions: These events were uncommon and brief. The incidence of neurological and chest symptoms was higher with foam sclerotherapy than with liquid. A history of migraine with aura was associated with an increased risk of posttreatment neurological symptoms. Events occurred with both large vein and small vein treatment. Some events were associated with liquid sclerotherapy rather than foam and with carbon dioxide based foam as well as air foam. There were no long-term adverse consequences. [ABSTRACT FROM AUTHOR]

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]

While earlier cinemas were built in response to growing urban populations during the twentieth century, the first wave of multiplexes in India were built in anticipation of future wealth. In recent years, multiplex developments have been targeting various areas identified for growth in the urban redevelopment plans now being adopted across India, anticipating a larger “consuming class” spreading beyond existing pockets of affluence and occupying suburban and satellite townships in what were until recently brown and greenfield sites. Exclusive leisure facilities such as the multiplex illustrate the growing socio-spatial segregation in Indian cities, and suggest the ways the consuming classes are transforming urban space in their own image. As such, while the significance of the multiplex to cultural perspectives in the “New India” is widely noted, they also illustrate much broader issues of the political economy of India that are almost never discussed in the same breath as cinema, including taxation and investment, environmental management and the politics of land zoning and land acquisition. [ABSTRACT FROM PUBLISHER]

Carbon forestry represents a degree of continuity and discontinuity with traditional conservation practices, rescripting forestry management/governance and land access through projects on the ground in variegated, context-dependent ways. Utilising the comparative lens of two distinct projects operating on state-led protected areas in the east of Uganda, and focusing on their contested boundaries, this paper reflects on these dynamics and tries to make sense of the implications for the rural communities within the project vicinities. The projects and their framings reassert the claims to territory of the state in different ways which are contingent upon and emergent from the local institutional and historical context, or ‘legacies of the land’, which can be seen in context to be disputed and contested. Whilst it must be said that there can be selectively progressive elements within carbon forestry initiatives, it can be observed that techno-centric interventions, which depoliticise their local contexts and selectively transnationalise access to land and forestry resources, can further marginalise local communities in the process. [ABSTRACT FROM PUBLISHER]

The already divisive politics of South Asia's trans-boundary water resources are further complicated by the rush to construct large- and medium-scale dams. While highly contested in India today, hydropower construction reflects a nexus of state and capital that discriminates against the poorest and most marginalised citizens. Alternatives to the multiple crises of water within and beyond India must look beyond state-centrism and, instead, promote multi-scalar civil society organisations and networks, which may contribute to a more sustainable and transparent South Asia in the future. [ABSTRACT FROM PUBLISHER]

It has been widely acknowledged that transboundary water resources are an issue of importance in northern South Asia and that water sharing is contentious both between and within the countries of the region. However, while much has been written about relations between the governments of the region and the various water-sharing treaties that have been enacted at different points in time, there has been little analysis devoted to alternative institutional arrangements that might enhance the effectiveness of regional cooperation. While the ongoing political fragmentation of the Indian subcontinent presents significant obstacles to the formation of such institutions, this article argues that a new, transparent regionalism will contribute to a more just and equitable distribution of these water resources. [ABSTRACT FROM AUTHOR]

The corporatisation of Port Klang from the mid-1980s onwards was a significant moment in the history of Malaysia's political economy and generated considerable momentum for the changes that were to occur in this late industrialising nation under the leadership of the Barisan Nasional government. In particular, the restructuring of how labour was organised in Malaysia's most significant port became frequently cited both within and outside the country as a model for tripartite labour privatisation and the well-managed divestment of state-owned enterprises. However, in the past decade, the organisation of labour in the port has again changed dramatically. Migrant labour from some of the poorest parts of Asia now makes up the majority of semi-skilled and unskilled workers. Based on fieldwork carried out during 2009 with workers from Bangladesh and Nepal who are employed in Port Klang, this paper suggested that a regulatory vacuum now exists in the port, which means foreign workers are often treated badly and have few avenues for dissent. An analysis of the changing labour regime in Port Klang over time can assist in understanding the contemporary political economy of Malaysia as well as illuminate debates about the spaces of migrant labour more broadly. [ABSTRACT FROM AUTHOR]

Originally planned to evaluate storm surge barriers, the New York City Panel on Climate Change (NPCC) instead developed a process for government agencies and private stakeholders to adapt critical infrastructure in New York City to the effects of climate change. In its influential 2010 report, the NPCC ignored the literature documenting the lessons learned from Hurricane Katrina striking New Orleans in 2005. A report by the American Society of Civil Engineers (ASCE) sums up these lessons in 10 calls to action. An examination of the NPCC report suggests that half of these lessons have been learned and half have not. Essentially, the ASCE makes public safety, health, and welfare, not adapting critical infrastructure, its top priorities. The NPCC report fails to quantify the risks, does not address the question of an acceptable level of risk, and does not evaluate the consequences of severe coastal flooding. Although storm surge barriers have been found to be hydrologically and technically feasible, they are dismissed as mere contributions to the discussion that are not needed for at least the next several decades, despite the report's own accounting of the extreme uncertainty and possible effects of severe hurricanes and nor'easters. The NPCC report features Flexible Adaptation Pathways to plan and revise adaptation measures over time, which ignore the possibility of hedging strategies and the wellestablished precautionary principle. Without an engineering presence, the NPCC also overlooks consideration of lead times in planning major projects. It is concluded that the NPCC report is delaying regional measures against severe coastal flooding, discouraging hedging and the precautionary principle, and deterring adequate measures to protect public safety, health, and welfare. [ABSTRACT FROM AUTHOR]

As part of a larger study on television exposure, 1,276 shows from the 2001-2002 television season were coded for sexual content. Compared to previous research, this study sampled more networks targeted to adolescents and examined differences across additional program genres. A unique feature is the assessment of sexual content across network types. Three genres were distinguished by high percentages of shows with sexual behavior and talk and greater explicitness. This pattern characterized premium cable movie channels compared to broadcast and other cable networks. Few genres consistently offer programming that is free of sexual content during peak times for teen viewing. [ABSTRACT FROM AUTHOR]

Presents information on a study which focused on carrier detection of phase-shift keying signals. Theories on the carrier detection system; Methodology and results of the study; Discussion and conclusions.

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]

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. [ABSTRACT FROM AUTHOR]

1. Describe two major patterns of symptom trajectories over time among children receiving palliative care services. 2. Identify three clinical and research implications of the two major symptom trajectory patterns observed in pediatric palliative care. Patients receiving pediatric palliative care services, broadly speaking, experience either persistent or declining levels of symptoms over the course of months-to-years of time, with the latter pattern associated with greater than 50% mortality. These findings provide prognostic information and prompt redoubled attention to improving symptom management regarding persistently elevated symptoms. A foundational goal of pediatric palliative care (PPC) is to relieve patient suffering attributable to various symptoms that occur during serious illness. While pediatric patients receiving PPC are known to experience often high levels of polysymptomatology, much less is known about how symptom levels change over time and how they relate to mortality. Identify patterns of symptom trajectories and association with mortality among patients receiving pediatric palliative care. 2-year cohort study of patients, birth to 30 years of age, receiving PPC services from 7 PPC programs across the United States with data collected at 0, 2, 6, 12, 18, and 24 months from 2017 to 2022. We identified latent group trajectories of total symptom score of 20 symptoms over time. Two symptom score trajectories were identified in this cohort of 603 patients. Just less than half (n= 287, 47.6%) demonstrated a "persistent" symptom trajectory. While individual patients in this group had symptoms scores that fluctuated up and down one measure to the next, their scores over months-to-years persisted in a stable range. By contrast, the other group (n= 316, 52.4%) demonstrated a "declining" symptom trajectory. Patients in this group initially had higher overall symptom scores that, while fluctuating, declined substantially over time. Patient age, conditions, race, and ethnicity were not associated with these patterns, but mortality was. While 8.4% of the persistent trajectory group died during the study period, more than half (52.4%) of the declining trajectory group died. Most but not all patients receiving PPC experience declining levels of symptoms over months-to-years, a pattern associated with high mortality; the remainder experience fluctuating but stably persistent symptom levels with much lower mortality. These findings provide prognostic information and prompt redoubled attention to improving symptom management regarding persistently elevated symptoms. Pediatrics/Pain and symptom control [ABSTRACT FROM AUTHOR]

We describe a model of parental (or more broadly, surrogate) decision-making that includes abstract 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems or decisions with multiple potential solutions, rather than a single problem, and the initial challenge is deciding which of the problems to focus on. Second, we discuss sense-making recognizing that difficult decisions are not made in isolation but are often part of a confusing, labyrinthian situation in which disoriented parents must make a series of decisions over time in hopes of getting closer to 1 or more goals. Third, we describe path dependency recognizing that decisions influence what and how decisions are made later. Fourth, we discuss personal sense of duty recognizing that parents and other surrogate decision- makers have central personal roles, self-identities, and relationships with the patient, culminating in a personal sense of duty, such as what they perceive they should do to be in their own judgment a "good parent," which substantially affects their decision-making. Fifth, we describe self-judgments recognizing that parents experience distress when they judge themselves as falling short of their duties or if they think others are judging them for falling short. Clinical practice, medical ethics, and research regarding decision support can all benefit by acknowledging and addressing these key aspects of medical decision-making. [ABSTRACT FROM AUTHOR]