<p><strong>CONTEXT: </strong>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.</p>

<p><strong>OBJECTIVE: </strong>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.</p>

<p><strong>METHODS: </strong>The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at 7 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.</p>

<p><strong>CONCLUSIONS: </strong>Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.</p>

<p><strong>CONTEXT: </strong>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.</p>

<p><strong>OBJECTIVES: </strong>To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals.</p>

<p><strong>METHODS: </strong>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.</p>

<p><strong>RESULTS: </strong>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.</p>

<p><strong>CONCLUSION: </strong>An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.</p>

<p> 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. To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time. Prospective cohort study. Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia. 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. 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. 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.</p>

<p><strong>BACKGROUND: </strong>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.</p>

<p><strong>OBJECTIVE: </strong>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.</p>

<p><strong>METHODS: </strong>Our longitudinal sample included 124 parents of 100 children hospitalized with serious illness. We used latent transition models (LTM) 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.</p>

<p><strong>RESULTS: </strong>Two parent belief profiles emerged from the LTM: 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, 8 parents transitioned to the Loved group and 4 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.</p>

<p><strong>CONCLUSION: </strong>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.</p>

<p><strong>OBJECTIVE: </strong>Serious pediatric illness places great stress on families. Parents who learn coping skills may better manage these stressors. This study sought to develop and refine a stress coping intervention for parents of hospitalized children, assess the intervention acceptability among these parents, and gather preliminary data on stress, negative and positive affect, anxiety, depression, and self-efficacy.</p>

<p><strong>METHODS: </strong>We conducted an observational study in 2 phases, enrolling parents of children who were inpatients with serious illness, 10 in Phase 1 and 40 in Phase 2. All parents completed at baseline measures of stress and psychological well-being and were introduced to the Coping Kit for Parents. Follow-up interviews were conducted at one week (all parents) and one month (Phase 2 parents only) regarding the acceptability of the intervention.</p>

<p><strong>RESULTS: </strong>At baseline, parents reported that stressful situations were frequent (mean=30.6, SD=6.8) and difficult (mean=26.2, SD=7.1), and revealed elevated levels of negative affect (mean=27.3, SD=7.7), depression (mean=8.5, SD=3.7) and anxiety (mean=11.3, SD=3.1), and moderate levels of self-efficacy related to their child's illness (mean=3.3, SD=0.5). The majority of parents used the kit regularly and on a scale of 1 to 7 agreed that the kit was helpful (mean=6.0, SD=0.9), interesting (mean=5.7, SD=1.3), practical (mean=5.7, SD=1.4), enjoyable (mean=6.0, SD=1.3), and they would recommend it to other parents (mean=6.4, SD=0.9).</p>

<p><strong>CONCLUSIONS: </strong>The Coping Kit for Parents is an acceptable stress management intervention that could be made available to parents of children with serious illness at pediatric hospitals with minimal staff training or time commitment.</p>

<p><strong>BACKGROUND: </strong>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.</p>

<p><strong>METHODS: </strong>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.</p>

<p><strong>RESULTS: </strong>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.</p>

<p><strong>CONCLUSIONS: </strong>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.</p>

<p><strong>CONTEXT: </strong>Parents of a seriously ill child may have different concerns and hopes for their child and these concerns and hopes may change over time.</p>

<p><strong>OBJECTIVE: </strong>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.</p>

<p><strong>METHODS: </strong>84 parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. 32 parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into 9 domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately.</p>

<p><strong>RESULTS: </strong>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.</p>

<p><strong>CONCLUSIONS: </strong>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.</p>

<p><strong>BACKGROUND AND OBJECTIVES: </strong>Pediatric inpatients with communication impairment may experience inadequate pain and symptom management. Research regarding potential variation in care among patients with and without communication impairment is hampered because existing pediatric databases do not include information about patient communication ability per se, even though these data sets do contain information about diagnoses and medical interventions that are probably correlated with the probability of communication impairment. Our objective was to develop and evaluate a classification model to identify patients in a large administrative database likely to be communication impaired.</p>

<p><strong>METHODS: </strong>Our sample included 236 hospitalized patients aged ≥12 months whose ability to communicate about pain had been assessed. We randomly split this sample into development (n = 118) and validation (n = 118) sets. A priori, we developed a set of specific diagnoses, technology dependencies, procedures, and medications recorded in the Pediatric Health Information System likely to be strongly associated with communication impairment. We used logistic regression modeling to calculate the probability of communication impairment for each patient in the development set, assessed the model performance, and evaluated the performance of the 11-variable model in the validation set.</p>

<p><strong>RESULTS: </strong>In the validation sample, the classification model showed excellent classification accuracy (area under the receiver operating characteristic curve 0.92; sensitivity 82.6%; 95% confidence interval, 74%-100%; specificity 86.3%; 95% confidence interval, 80%-97%). For the complete sample, the predicted probability of communication impairment demonstrated excellent calibration with the observed communication impairment status.</p>

<p><strong>CONCLUSIONS: </strong>Hospitalized pediatric patients with communication impairment can be accurately identified in a large hospital administrative database.</p>

<p><strong>OBJECTIVE: </strong>To assess sources of support and guidance on which parents rely when making difficult decisions in the pediatric intensive care unit and to evaluate associations of sources of support and guidance to anxiety, depression, and positive and negative affect.</p>

<p><strong>STUDY DESIGN: </strong>This was a prospective cohort study of 86 English-speaking parents of 75 children in the pediatric intensive care unit at The Children's Hospital of Philadelphia who were hospitalized greater than 72&nbsp;hours. Parents completed standardized instruments and a novel sources of support and guidance assessment.</p>

<p><strong>RESULTS: </strong>Most parents chose physicians, nurses, friends, and extended family as their main sources of support and guidance when making a difficult decision. Descriptive analysis revealed a broad distribution for the sources of support and guidance items related to spirituality. Parents tended to fall into 1 of 2 groups when we used latent class analysis: the more-spiritual group (n&nbsp;=&nbsp;47; 55%) highly ranked "what my child wants" (P&nbsp;=&nbsp;.023), spouses (P&nbsp;=&nbsp;.002), support groups (P&nbsp;=&nbsp;.003), church community (P&nbsp;&lt;&nbsp;.001), spiritual leader (P&nbsp;&lt;&nbsp;.001), higher power (P&nbsp;&lt;&nbsp;.001), and prayer (P&nbsp;&lt;&nbsp;.001) compared with the less-spiritual group (n&nbsp;=&nbsp;39; 45%). The more-spiritual parents had greater positive affect scores (P&nbsp;=&nbsp;.005). Less-spiritual parents had greater depression scores (P&nbsp;=&nbsp;.043).</p>

<p><strong>CONCLUSIONS: </strong>Parents rely most on physicians, nurses, and friends and extended family when making difficult decisions for their critically ill child. Respondents tended to fall into 1 of 2 groups where the more-spiritual respondents were associated with greater positive affect and may be more resistant to depression.</p>

<p><strong>OBJECTIVE: </strong>To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect.</p>

<p><strong>DESIGN: </strong>Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010.</p>

<p><strong>SETTING: </strong>Pediatric intensive care unit at The Children's Hospital of Philadelphia.</p>

<p><strong>PARTICIPANTS: </strong>Eighty-seven English-speaking parents of 75 children either &lt;18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for &gt;72 hrs.</p>

<p><strong>INTERVENTIONS: </strong>Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect.</p>

<p><strong>MEASUREMENTS AND MAIN RESULTS: </strong>The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree.</p>

<p><strong>CONCLUSIONS: </strong>Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.</p>