A Pediatric Interprofessional Cardiac Intensive Care Unit Intervention: CICU Teams and Loved Ones Communicating (CICU TALC) is Feasible, Acceptable, and Improves Clinician Communication Behaviors in Family Meetings.

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.

Caregiver perspectives of pre-transplant evaluation in children.

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.

Association of psychological distress and religious coping tendencies in parents of children recently diagnosed with cancer: A cross-sectional study.

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.

Perspectives of adolescents with severe obesity on social Media in Preparation for weight-loss surgery: a qualitative study.

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.

Association of dairy intake with weight change in adolescents undergoing obesity treatment.

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 (ß = -0.0054, P < 0.01), unflavored milk (ß = -0.012, P < 0.01), reduced fat (ß = -0.0078, P < 0.05), and low fat/fat-free products (ß = -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 (ß = -0.186, P = 0.001), unflavored milk (ß = -0.115, P = 0.003) and low fat/fat-free dairy (ß = -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.

A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review.

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.

The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology.

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.

How quantity and quality of brace wear affect the brace treatment outcomes for AIS.

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.

Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care.

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.

Reliability and accuracy of ultrasound measurements with and without the aid of previous radiographs in adolescent idiopathic scoliosis (AIS).

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.

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals.

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.

Association of Very Low Birth Weight Infants With Parental and Sibling Mental Health Care Usage.

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.

Hope in the context of life-threatening illness and the end of life.

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.

Goals of Care Among Parents of Children Receiving Palliative Care.

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.

Trust in Physicians, Anxiety and Depression, and Decision-Making Preferences among Parents of Children with Serious Illness.

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.

Home-Based Care for Children with Serious Illness: Ecological Framework and Research Implications.

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.