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

<p><strong>DISCUSSION: </strong>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.</p>

<p><strong>CONCLUSIONS: </strong>Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.</p>

<p>In her classic 1969 book, <em>On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families</em> (Kübler-Ross 2014), Kübler-Ross&nbsp;identified many short-comings in the care of dying patients. during the intervening half century, end-of-life care has changed dramatically. yet even today, clinicians still struggle with two of the core issues that Kübler-Ross identified but did not adequately address. Specifically, Kübler-Ross conceptualized hope too narrowly, and as a consequence she struggled to offer a coherent view about how to be honest with dying patients. Unfortunately, hope and honesty are still poorly understood and thus mishandled, with important negative ethical and clinical repercussions for the care that patients with serious illness receive. But with new concepts and focused skills training, we can hope to do better.</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>CONTEXT: </strong>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.</p>

<p><strong>OBJECTIVES: </strong>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.</p>

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

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

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

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

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

<p><strong>CONCLUSIONS: </strong>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.</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>Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns.</p>

<p><strong>OBJECTIVE: </strong>To explore how pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation.</p>

<p><strong>METHODS: </strong>We conducted semi-structured qualitative interviews with pediatric oncology providers at a large children's hospital. Interviews were audio recorded, transcribed and analyzed by two coders using a modified grounded theory approach.</p>

<p><strong>RESULTS: </strong>We interviewed 16 providers (10 physicians, 1 nurse practitioner, 2 social workers, 2 psychologists and 1 child life specialist). Three core perceptions emerged: (1) the PPCS offers a diverse range of valuable contributions to the care of children with advancing cancer; (2) providers held favorable opinions about the PPCS due to positive interactions with individual palliative care specialists deemed extraordinarily emotionally skilled; and (3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation.</p>

<p><strong>CONCLUSION: </strong>The pediatric oncology providers in our study held a highly favorable opinion about their institution's PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of palliative care in this population may benefit from a focus on the emotional experiences of providers.</p>