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The fit between the Supportive Care Model and existing research on parent perspectives about pediatric palliative care was explored following a review of the literature. An electronic search of Medline and CINAHL from 2004 to January 2009 resulted in 49 articles on 38 studies that sought parent perspectives on care provided by health professionals during palliation, end of life, and/or bereavement. Results were synthesized according to the dimensions of the Supportive Care Model. The model fit well with the research, indicating that the highest quality pediatric palliative care occurred when there was a fundamental valuing of the child and family, when individual human connections were made and continued throughout and following illness and death, when families felt empowered, when some aspects of care were performed for families, when families were supported in their search for meaning in their situation, and when the integrity of each individual and the family as a whole was preserved. The research also suggests that careful assessment of individual family preferences within each dimension is crucial. The model is proposed as a helpful guide for clinical practice with dying children and their families. [ABSTRACT FROM AUTHOR]

Aim To explore generational differences in job satisfaction. Background Effective retention strategies are required to mitigate the international nursing shortage. Job satisfaction, a strong and consistent predictor of retention, may differ across generations. Understanding job satisfaction generational differences may lead to increasing clarity about generation-specific retention approaches. Method The Ontario Nurse Survey collected data from 6541 Registered Nurses. Participants were categorized as Baby Boomer, Generation X or Generation Y based on birth year. Multivariate analysis of variance explored generational differences for overall and specific satisfaction components. Results In overall job satisfaction and five specific satisfaction components, Baby Boomers were significantly more satisfied than Generations X and Y. Conclusion It is imperative to improve job satisfaction for younger generations of nurses. Implications for Nursing Management Strategies to improve job satisfaction for younger generations of nurses may include creating a shared governance framework where nurses are empowered to make decisions. Implementing shared governance, through nurse-led unit-based councils, may lead to greater job satisfaction, particularly for younger nurses. Opportunities to self schedule or job share may be other potential approaches to increase job satisfaction, especially for younger generations of nurses. Another potential strategy would be to aggressively provide and support education and career-development opportunities. [ABSTRACT FROM AUTHOR]

OBJECTIVE: The purpose of this study was to describe the quality of care provided before, at the time of, and following the death of an infant, child, or adolescent from the perspective of the parent, using a newly developed survey. SAMPLE AND METHODS: Parents were asked to participate in this study if they experienced a stillbirth or death of an infant/child/youth between 12 and 24 months prior to the beginning of the study. Thirty-eight families completed the survey with one of the researchers over the telephone or in person. Survey questions asked parents to report on the care received rather than rate how satisfied they were with care. RESULTS: Parents were reluctant to report negative occurrences in care they received, yet, when questioned further, nearly every parent could relate a particular event or person who had a negative impact on their experience. Parents identified communication between health professionals, relationships with health professionals, care at the time of death, and bereavement follow-up as problematic areas. CONCLUSION: There is room for improvement in the end-of-life care provided to infants, children and youth, and their families. [ABSTRACT FROM AUTHOR]

Abstract Background Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. Methods/Design Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. Discussion Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.

Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child's transplant with a specific focus on the impact of healthcare providers on parents' experience of waiting. Six parents from four different families participated in interviews and observations. Our narrative analysis suggested that parents had no narrative roadmap to navigate waiting and the importance of healthcare providers' tailoring the amount and type of medical information to a parents' needs. We discuss how waiting required parents to be hypervigilant and provide continuity of care for their child, and how this "managerial role" could lead to a loss of trust with their healthcare providers. Parents' accounts were replete with contradictions, and as an extension of this, waiting was full of contradictions. Findings contribute to conceptual, methodological, and practical work exploring how parents live in deep uncertainty about the future, and how healthcare providers can support parents in their child's transplantation and other life-threatening illness contexts., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement., Objectives: To describe the skills that caregivers developed as they gained experience making medical decisions., Methods: Eligible caregivers had a child who met referral criteria for their centre's Complex Care program for >1 year, were adults responsible for their child's medical decisions, and spoke English or a language with an available interpreter. We followed a semistructured interview guide to ask caregivers to describe and reflect on two challenging medical decisions that they made for their child-one early and one recent. Guided by interpretive description, we identified and refined themes in an iterative process., Results: We conducted 15 interviews with 16 parents (14 [88%] women, two [13%] men) of a child with medical complexity (aged 1-17 years). Parents described 1) becoming more adept at managing decisional information, 2) recognizing the influence of the decision's context, 3) building stronger relationships with providers, and 4) becoming more effective at guiding their child's care as a decision-maker. As parents built these skills, they developed a greater sense of agency and confidence as decision-makers., Conclusion: Parents of children with medical complexity change how they approach decision making over time as they acquire relevant skills. These findings can inform the development of interventions to support skill-building among new caregivers., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child's condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period., Methods: Seventy siblings were recruited from a large-survey based study (Charting the Territory) that examined the bio-psychosocial health outcomes of parents and siblings. Linear mixed effect models were used to assess the association between siblings' emotions and behaviour trajectories and selected demographic variables. Siblings' emotions and behaviour were measured with Child Behaviour Checklist (CBCL)., Results: Siblings' mean age was 11.2 years at baseline and Internalizing, Externalizing, and Total Behaviour Problems mean scores were within normal ranges across time. However, 7-25% of siblings had scores within the clinical range. Brothers had higher levels of Internalizing Problems than sisters, whereas sisters had higher levels of Externalizing Problems than brothers. When treatment was first sought for the ill child less than a year prior to study participation, siblings had higher levels of Internalizing and Externalizing Problems compared with siblings who participated more than one year after treatment was sought., Conclusion: Healthy siblings experience emotional and behavioural problems early in the child's disease trajectory. Although these problems improve with time, our findings show that brothers and sisters experience different types of challenges. Therefore, timely support for siblings is important as they navigate through the uncertainties and challenges., (© 2024. The Author(s).)

Purpose: The quality of life (QOL) experiences of children and adolescents living with advanced cancer have been under-explored. Enhancing QOL for this population is a dominant goal of their healthcare yet, there has been little research identifying aspects that impact their QOL. The purpose of this meta-synthesis was to identify themes of QOL informed from the voices of children and adolescents living with advanced cancer., Methods: This meta-synthesis utilized meta-ethnography to synthesize data from individual studies in order to develop new conceptual understanding of what is important to children and adolescents about their lives when living with advanced cancer., Results: Our analysis identified themes of QOL relevant to children and adolescents with advanced cancer: (1) feeling supported and wanting to support others; (2) re-establishing normal; (3) suffering and emotional distress; (4) new perspectives; (5) maintaining autonomy; and (6) awareness of time. These themes differed from more traditional dimensions of QOL often applied to children and adolescents with cancer., Conclusion: This research is novel as its developed themes originated from the direct voices and expressed perspectives of children and adolescents living with advanced cancer. This is a significant initial step toward both understanding QOL in this specific context and the measurement of QOL for this population., (© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Importance: Children requiring care in a pediatric intensive care unit (PICU) are known to have increased risk of subsequent mortality. Children with severe neurologic impairment (SNI)-who carry neurologic or genetic diagnoses with functional impairments and medical complexity-are frequently admitted to PICUs. Although recurrent PICU critical illness episodes (PICU-CIEs) are assumed to indicate a poor prognosis, the association between recurrent PICU-CIEs and mortality in this patient population is poorly understood., Objective: To assess the association between number of recent PICU-CIEs and survival among children with severe neurologic impairment., Design, Setting, and Participants: This population-based retrospective cohort study used health administrative data from April 1, 2002, to March 31, 2020, on 4774 children born between 2002 and 2019 with an SNI diagnosis code in an Ontario, Canada, hospital record before 16 years of age and a first PICU-CIE from 2002 to 2019. Data were analyzed from November 2021 to June 2023., Exposure: Pediatric intensive care unit critical illness episodes (excluding brief postoperative PICU admissions)., Main Outcome and Measures: One-year survival conditioned on the number and severity (length of stay >15 days or use of invasive mechanical ventilation) of PICU-CIEs in the preceding year., Results: In Ontario, 4774 children with SNI (mean [SD] age, 2.1 [3.6] months; 2636 [55.2%] <1 year of age; 2613 boys [54.7%]) were discharged alive between 2002 and 2019 after their first PICU-CIE. Ten-year survival after the initial episode was 81% (95% CI, 79%-82%) for children younger than 1 year of age and 84% (95% CI, 82%-86%) for children 1 year of age or older; the age-stratified curves converged by 15 years after the initial episode at 79% survival (95% CI, 78%-81% for children <1 year and 95% CI, 75%-84% for children ≥1 year). Adjusted for age category and demographic factors, the presence of nonneurologic complex chronic conditions (adjusted hazard ratio [AHR], 1.70 [95% CI, 1.43-2.02]) and medical technology assistance (AHR, 2.32 [95% CI, 1.92-2.81]) were associated with increased mortality. Conditional 1-year mortality was less than 20% regardless of number or severity of recent PICU-CIEs. Among children with high-risk PICU-CIEs, 1-year conditional survival decreased from 90% (95% CI, 89%-91%) after the first PICU-CIE to 81% (95% CI, 77%-86%) after the fourth PICU-CIE., Conclusions and Relevance: This cohort study of children with SNI demonstrated a modest dose-dependent association between PICU-CIEs and short-term mortality. These data did not support the conventional wisdom that recurrent PICU admissions are associated with subsequent high mortality risk.

Background: Acute leukemia is a cancer of the blood and bone marrow with a high symptom burden and a high mortality rate in adults. The quality of end-of-life care among this patient population is deemed to be low based on health care administrative data, though the patient experience is not included in this evaluation. Objective: This scoping review aims at exploring and mapping the current research literature on the experience of care among adults with incurable acute leukemia near the end of life. Design: The JBI framework guided our scoping review, and the protocol was prospectively registered in the Open Science Forum. Results: A total of 5661 unique articles were screened for title and abstract, and 44 were selected for full text. After a manual search, five studies published in seven articles were selected for data extraction, including three qualitative and two quantitative studies. Two studies used family caregivers as patient proxies, two studies engaged patients directly, whereas one study obtained data from patients and family caregivers. Patient care in acute settings was reported in all studies, with most patients dying in acute care settings. Patients and family caregivers often valued an open and honest approach, with sufficient time for dialogue with their providers. Discussions about prognosis, palliative care, and hospice care were often late or incomplete. The medicalization of end-of-life care, including intensive care unit admissions and invasive medical procedures, were viewed as the norm by some providers, though perceived as distressing for both patients and their loved ones. Conclusions: Adults with acute leukemia face significant challenges in accessing high-quality end-of-life care brought about by the complex nature of their disease and its treatment. A systematic exploration of the end-of-life experience among these patients through direct patient engagement or by way of patient reporting proxies is needed.

Importance: Adolescents and young adults (AYAs) with cancer experience substantial symptom burden. Specialty palliative care (SPC) is recommended but often not involved or involved late., Objectives: To determine whether patient-reported symptom severity was associated with subsequent SPC involvement and whether SPC was associated with symptom improvement in AYAs with cancer., Design, Setting, and Participants: This cohort study comprised AYAs (aged 15-29 years) with primary cancer diagnosed between January 1, 2010, and June 30, 2018, in Ontario, Canada. Data, including self-reported Edmonton Symptom Assessment System (ESAS) scores, were obtained from health care databases. Specialty palliative care was identified through billing codes and validated algorithms. Final data analysis was performed on April 4, 2023., Main Outcomes and Measures: Associations of ESAS scores with subsequent SPC involvement were determined. A difference-in-differences approach was used for patients who died within 5 years of their cancer diagnosis. Case patients (SPC predeath, index date equals first SPC service) were matched 1:1 to control patients (no SPC at equivalent time before death). The study examined whether the difference between 90-day postindex and preindex mean ESAS scores was itself different between case and control patients., Results: This study included 5435 AYAs with cancer, with a median follow-up of 5.1 (IQR, 2.5-7.9) years for analyses of general palliative care. Their median age at cancer diagnosis was 25 (IQR, 22-27) years, and more than half were male (2809 [51.7%]). For all symptoms, moderate and severe ESAS scores were associated with an increased likelihood of SPC involvement compared with mild scores. The greatest magnitude of association was seen for pain scores (hazard ratio for severe vs mild, 7.7 [95% CI, 5.8-10.2]; P < .001). A total of 721 AYAs (13.3%) died within 5 years of diagnosis, and 612 of these patients (84.9%) had received SPC before death. Among 202 case-control pairs, SPC involvement was associated with improved pain trajectories (mean scores improved from 3.41 to 3.07 in case patients and worsened from 1.86 to 2.16 in control patients; P = .003). Other symptom trajectories were not affected., Conclusions and Relevance: In this cohort study of AYAs with cancer, those reporting moderate or severe symptoms through a screening program were more likely to subsequently receive SPC. These findings suggest that SPC was associated with a subsequent decrease in pain severity but did not affect other symptoms. New interventions targeting other symptoms during treatment and particularly at the end of life are needed.

Background: The impact of a child's cancer diagnosis on subsequent maternal physical health is unclear., Methods: We identified all Ontario children diagnosed less than 18 years with cancer between 1992 and 2017. Linkage to administrative databases identified mothers who were matched to population controls. We identified physical health conditions, acute healthcare use, and preventive healthcare use through validated algorithms using healthcare data, and compared them between exposed (child with cancer) and unexposed mothers. Predictors of health outcomes were assessed among exposed mothers., Results: We identified 5311 exposed mothers and 19,516 matched unexposed mothers. For exposed mothers, median age at last follow-up was 48 years, (interquartile range: 42-53). Exposed mothers had an increased risk of cancer (hazard ratio [HR] 1.2, 95% confidence interval [95% CI]: 1.0-1.5, p = .03), but not of any other adverse physical outcomes or of increased acute healthcare use. Exposed mothers were more likely to receive influenza vaccinations (odds ratio 1.4, 95% CI: 1.3-1.5, p < .0001), and underwent cancer screening at the same rate as unexposed mothers. Among exposed mothers, bereavement was associated with a subsequent increased risk of cancer (HR 1.7, 95% CI: 1.2-2.5, p = .004) and death (HR 2.2, 95% CI: 1.2-4.1, p = .01)., Conclusion: Mothers of children with cancer are at increased risk of developing cancer, but not of other adverse physical health outcomes, and were equally or more likely to be adherent to preventive healthcare practices. Bereaved mothers were at increased risk of subsequent cancer and death. Interventions targeting specific subpopulations of mothers of children with cancer or focused on screening for specific cancers may be warranted., (© 2023 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC.)

Purpose: Moral distress (MoD) is prevalent among health care professionals (HCPs) in oncology and is associated with burnout. The objectives of this study were to quantify MoD among pediatric oncology healthcare professionals (HCPs) at a Canadian quaternary care hospital, identify root causes, and evaluate change over time., Methods: Eligible pediatric oncology HCPs were identified, and consenting participants completed the Measure of Moral Distress-Healthcare Professionals (MMD-HP) and MoD Thermometer (MDT) at baseline, followed by biweekly MDTs over 12 weeks., Results: A total of 139 HCPs participated. The mean MMD-HP score was 123 ± 57.0, range 9-288. Demographic risk factors identified for elevated MMD-HP scores were female sex (female 127.1 and male 83.6, P = .01) and nursing role (nurse 136.3 and most responsible physician 85.3, P = .02). Higher MMD-HP scores were found in HCPs who were currently considering resigning because of MoD compared with those who were not (169.9 v 115.4, P < .001). Situations involving administration of treatment to children with poor prognosis cancers that was perceived to be overly aggressive were ranked as the greatest environmental contributor to MoD. Baseline and mean MDT scores over time strongly correlated with MMD-HP scores ( P < .0001 and P = .0003, respectively), with mean MDT scores showing no significant fluctuation over the 12-week period., Conclusion: MoD was common among pediatric oncology HCPs. Risk factors for elevated levels of MoD included both demographic and environmental factors. Implementation of systems to improve team communication and decision making, especially in the care of patients with poor prognosis cancers, may affect HCP MoD.

Background: Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and distance that the child lives from a tertiary hospital. We examined: 1) the prevalence of indicators of high intensity end-of-life care (e.g., hospital stays, intensive care unit [ICU] stays, death in ICU, use of cardiopulmonary resuscitation [CPR], use of mechanical ventilation) and 2) the association between demographic and diagnostic factors and each indicator for children with any life-threatening condition in Canada., Methods: We conducted a population-based retrospective cohort study using linked health administrative data to examine care provided in the last 14, 30, and 90 days of life to children who died between 3 months and 19 years of age from January 1, 2008 to December 31, 2014 from any underlying life-threatening medical condition. Logistic regression was used to model the association between demographic and diagnostic variables and each indicator of high intensity end-of-life care except number of hospital days where negative binomial regression was used., Results: Across 2435 child decedents, the most common diagnoses included neurology (51.1%), oncology (38.0%), and congenital illness (35.9%), with 50.9% of children having diagnoses in three or more categories. In the last 30 days of life, 42.5% (n = 1035) of the children had an ICU stay and 36.1% (n = 880) died in ICU. Children with cancer had lower odds of an ICU stay (OR = 0.47; 95% CI = 0.36-0.62) and ICU death (OR = 0.37; 95%CI = 0.28-0.50) than children with any other diagnoses. Children with 3 or more diagnoses (vs. 1 diagnosis) had higher odds of > 1 hospital stay in the last 30 days of life (OR = 2.08; 95%CI = 1.29-3.35). Living > 400 km (vs < 50 km) from a tertiary pediatric hospital was associated with higher odds of multiple hospitalizations (OR = 2.09; 95%CI = 1.33-3.33)., Conclusion: High intensity end of life care is prevalent in children who die from life threatening conditions, particularly those with a non-cancer diagnosis. Further research is needed to understand and identify opportunities to enhance care across disease groups., (© 2023. The Author(s).)

Despite the senses being a valuable source of knowledge, little research has explored the sensory process of medical experiences. This narrative ethnographic study investigated how the senses shaped parents' experiences of waiting for their child to receive a solid organ, stem cell, or bone marrow transplant. Six parents from four different families primarily participated in sensory interviews as well as observations that explored the question: How do parents experience waiting using the five senses? Our narrative analysis suggested that parents' bodies stored sense memories, and they re-experienced stories of waiting through the senses and 'felt realities'. In addition, the senses transported families back to the emotional experience of waiting, which highlighted the longevity of waiting after receiving a transplant. We discuss how the senses provide important information about the body, waiting experiences, and the environmental contexts that mediate waiting. Findings contribute to theoretical and methodological work exploring how bodies are implicated in producing narratives.

Competing Interests: The author has no funding or conflicts of interest to disclose.

Background: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to identify demographic, socioeconomic and geographic factors associated with variations in location of death for children across Canada with life-threatening conditions., Methods: We used a retrospective observational cohort design and the Canadian Vital Statistics Database to identify children aged 19 years or younger who died from a life-threatening condition between Jan. 1, 2008, and Dec. 31, 2014. We used multivariable logistic regression to determine predictors of in-hospital death for children aged 1 month to 19 years, and for neonates younger than 1 month., Results: Overall, 13 115 decedents younger than 19 years had life-threatening conditions. Of 5250 children and 7865 neonates, 74.2% and 98.1%, respectively, died in hospital. Among children, we found a higher proportion of hospital deaths in the lowest (v. highest) income quintile (odds ratio [OR] 1.59, 95% confidence interval [CI] 1.28-1.97), and a lower proportion among children living more than 400 km (v. < 50 km) from a pediatric hospital (OR 0.73, 95% CI 0.65-0.86). Compared with Ontario, hospital death was most common in Quebec (OR 1.38, 95% CI 1.14-1.67) and least common in British Columbia (OR 0.43, 95% CI 0.34-0.53). Compared with an oncologic cause of death, all causes except neurologic and metabolic conditions had significantly higher odds of dying in hospital., Interpretation: In addition to demographics, we identified socioeconomic and geographic differences in location of death, suggesting potential inequities in access to high-quality care at the end of life. Health care policies and practices must ensure equitable access to services for children across Canada, particularly at the end of their life., Competing Interests: Competing interests: None declared., (© 2023 CMA Impact Inc. or its licensors.)

Context: Many adolescents and young adults (AYAs; 15-39 years) with cancer receive high intensity (HI) care at the end of life (EOL). Palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized vs. generalist PC (SPC, GPC) is unknown., Objectives: (1) To evaluate whether SPC had an impact on the intensity of EOL care received by AYAs with cancer; (2) to determine which subpopulations are at highest risk for reduced access to SPC., Methods: A decedent cohort of AYAs with cancer who died between 2000-2017 in Ontario, Canada was identified using registry and population-based data. The primary composite measure of HI-EOL care included any of: intravenous chemotherapy <14 days from death; more than one ED visit, more than one hospitalization or any ICU admission <30 days from death. Physician's billing codes were used to define SPC and GPC involvement., Results: Of 7122 AYA decedents, 2140 (30%) received SPC and 943 (13%) received GPC. AYAs who died in earlier years, those with hematologic malignancies, males and rural AYAs were least likely to receive SPC. No PC involvement was associated with higher odds of receiving HI-EOL care (odds ratio (OR) 1.5; P < 0.0001). SPC involvement was associated with the lowest risk of HI-EOL care (OR SPC vs. GPC 0.8; P = 0.007) and decreased odds of ICU admission (OR 0.7; P = 0.006)., Conclusion: SPC involvement was associated with the lowest risk of HI-EOL care in AYAs with cancer. However, access to SPC remains a challenge., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: The aim of this study is to extrapolate the clinical features of children with severe neurologic impairment (SNI) based on the functional characteristics and comorbidities described in published studies., Methods: Four databases were searched. We included studies that describe clinical features of a group of children with SNI (≥20 subjects <19 years of age with >1 neurologic diagnosis and severe functional limitation) using data from caregivers, medical charts, or prospective collection. Studies that were not written in English were excluded. We extracted data about functional characteristics, comorbidities, and study topics., Results: We included 102 studies, spanning 5 continents over 43 years, using 41 distinct terms for SNI. The terms SNI and neurologic impairment (NI) were used in 59 studies (58%). Most studies (n = 81, 79%) described ≥3 types of functional characteristics, such as technology assistance and motor impairment. Studies noted 59 comorbidities and surgeries across 10 categories. The most common comorbidities were related to feeding, nutrition, and the gastrointestinal system, which were described in 79 studies (77%). Most comorbidities (76%) were noted in <10 studies. Studies investigated seven clinical topics, with "Gastrointestinal reflux and feeding tubes" as the most common research focus (n = 57, 56%). The next most common topic, "Aspiration and respiratory issues," included 13 studies (13%). Most studies (n = 54, 53%) were retrospective cohorts or case series; there were no clinical trials., Conclusions: Despite the breadth of described comorbidities, studies focused on a narrow set of clinical topics. Further research is required to understand the prevalence, clinical impact, and interaction of the multiple comorbidities that are common in children with SNI., (© 2022 Society of Hospital Medicine.)

Sibling relationships are one of the most long-lasting and influential relationships in a human's life. Living with a child who has a life-threatening condition changes healthy siblings' experience. This scoping review summarized and mapped research examining healthy siblings' experience of living with a child with a life-threatening condition to identify knowledge gaps and provide direction for future research. Studies were identified through five electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Four broad themes of sibling experience were identified across studies: family functioning, psychological well-being, social well-being, and coping. Siblings experienced challenges and difficulties over the course of the child's illness. Future research should incorporate longitudinal designs to better understand the trajectory of siblings' experiences and focus on a wider variety of life-threatening conditions.

Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. Design: A retrospective cohort study used administrative databases to compare outcomes for child decedents (age 31 days to 19 years) from two similar regions in Ontario, Canada between 2010 and 2014, wherein one region had SPPC services (SPPC+) and the other did not (SPPC-). Measurements: Administrative databases provided demographics, health care utilization (days), and costs Canadian dollars) across settings in the last year of life, and location of death. Multivariable analyses produced relative rates (RRs) of health care days (acute and home care), intensive care unit (ICU) days, and health care costs (inpatient, outpatient, home, and physician) as well as the odds ratio (OR) of in-hospital death. Counterfactual analysis quantified the differences in utilization and costs. Results: A total of 807 children were included. On multivariable analysis, residence in the SPPC+ region ( n  = 363) was associated with fewer mean health care days (RR = 0.73; 95% confidence interval [CI]: 0.59-0.90); fewer mean ICU days (RR = 0.64; 95% CI: 0.44-0.94); lower mean health care costs (RR = 0.71; 95% CI: 0.56-0.91); and lower likelihood of in-hospital death (OR = 0.67; 95% CI: 0.49-0.92). The counterfactual analysis estimated mean reductions of 16.2 days (95% CI: 14.4-18.0) and $24,940 (95% CI: $21,703-$28,177) per child in the SPPC+ region. Conclusions: Although not a causal study, these results support an association between regional SPPC services and decreased health care utilization, intensity, and cost for children near end of life.

Objective: To assess the performance of previously published high-intensity neurologic impairment (NI) diagnosis codes in identification of hospitalized children with clinical NI., Methods: Retrospective study of 500 randomly selected discharges in 2019 from a freestanding children's hospital. All charts were reviewed for 1) NI discharge diagnosis codes and 2) documentation of clinical NI (a neurologic diagnosis and indication of functional impairment like medical technology). Test statistics of clinical NI were calculated for discharges with and without an NI diagnosis code. A sensitivity analysis varied the threshold for "substantial functional impairment." Secondary analyses evaluated misclassified discharges and a more stringent definition for NI., Results: Diagnosis codes identified clinically documented NI with 88.1% (95% confidence interval [CI]: 84.7, 91) specificity, and 79.4% (95% CI: 67.3, 88.5) sensitivity; negative predictive value (NPV) was 96.7% (95% CI: 94.8, 98.0), and positive predictive value (PPV) was 49% (95% CI: 42, 56.1). Including children with milder functional impairment (lower threshold) resulted in NPV of 95.7% and PPV of 77.5%. Restricting to children with more severe functional impairment (higher threshold) resulted in NPV of 98.2% and PPV of 44.1%. Misclassification was primarily due to inclusion of children without functional impairments. A more stringent NI definition including diagnosis codes for NI and feeding tubes had a specificity of 98.4% (95% CI: 96.7-99.3) and sensitivity of 28.6% (19.4-41.3)., Conclusions: All scenarios evaluated demonstrated high NPV and low-to-moderate PPV of the diagnostic code list. To maximize clinical utility, NI diagnosis codes should be used with strategies to mitigate the risk of misclassification., (Copyright © 2021 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Background: Chronic kidney disease (CKD) and kidney failure in childhood are associated with significant and life-altering morbidities and lower quality of life. Emerging evidence suggests that management should be guided in part by symptom burden; however, there is currently no standardized assessment tool for quantifying symptom burden in this pediatric population. This study aimed to develop and refine a patient-reported symptom assessment tool for children with CKD/kidney failure (PRO-Kid), to evaluate the frequency and impact of symptoms., Methods: This was a prospective observational study of children and caregivers of children with CKD/kidney failure at two Canadian pediatric care centers. Building on previously published patient-reported outcome measures (PROs) for the assessment of symptom burden in other populations, we drafted a 13-item questionnaire. Cognitive interviews were performed with children and caregivers of children with CKD/kidney failure to iteratively refine the questionnaire., Results: Twenty-four participants completed cognitive interviewing (11 children, 13 caregivers). The most common symptoms endorsed were feeling left out, feeling sad/depressed, inability to focus, tiredness, nausea, vomiting, not wanting to eat, and changes in the taste of food. Feeling left out was added to the questionnaire as almost all participants voiced this as a frequent and impactful symptom, resulting in a 14-item questionnaire., Conclusions: PRO-Kid is the first pediatric CKD/kidney failure-specific PRO tool to assess symptom burden. Future work should validate this tool in a larger cohort so that it may be used to improve the care of children living with CKD/kidney failure. A higher resolution version of the Graphical abstract is available as Supplementary information., (© 2021. The Author(s), under exclusive licence to International Pediatric Nephrology Association.)

Background: Pediatric nurses care for some of the most vulnerable patients in our healthcare system and are vulnerable to the impact of the stress of their work on their well-being. Burnout is a potential response to chronic interpersonal stressors and a negative work outcome linked to personal and professional consequences. A thorough understanding of the experience and factors associated with burnout in this population is an important part of developing interventions to mitigate or prevent this workplace outcome. Therefore, our study objectives were to: (1) explain and expand our understanding of pediatric critical care nurses experience of burnout in relation to their work environment and work engagement; (2) provide recommendations for nursing administrators to improve nurses' work environment, work attitudes, and work outcomes., Methods: A convenience sample of pediatric critical care nurses from a large pediatric quaternary care hospital in Ontario, Canada were invited to participate in this second phase of a sequential explanatory mixed-methods study. Semi-structured interviews were conducted, with and main themes and subthemes distilled through the method of interpretive description., Results: A total of 18 PICU/CCCU/NICU nurses participated. Derived themes included the experience and identification of burnout, including its prevalence and elusiveness. Their experiences of quality of work-life included themes such as compensation, emotional support at work, respect, their professional identity, and spill over into home life. They discussed components of work engagement, including the work itself, investment into their growth and development, and the meaning of their work. The self-care subthemes included the importance of preparation and recovery, and the use of physical and mental separation as a preservation strategy. The participants' recommendations for strategies to mitigate burnout were also summarized., Conclusion: Burnout is a complex and regularly occurring experience for pediatric critical care nurses. Although the experience may be difficult to self-identify, the impacts on the individuals are profound. Further research and organizational support are needed to test practical and evidence-based interventions to improve the well-being of this population., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Buckley, Berta, Cleverley and Widger.)

Background: Sleep concerns are commonly reported by children and youth with cystic fibrosis (CF). Understanding normative sleep in the home environment and as reported from the perspective of patients and parents is a first step in responding to an important clinical concern and developing a sleep intervention strategy. This systematic review aimed to describe actigraphic and self/parent reported measures of sleep quantity; quality; and determine factors associated with poor sleep quantity and/or quality in children and youth (0-25yrs.) with CF., Methods: Five online databases; Medline, Embase, CINAHL, PsycInfo, and CENTRAL were searched for relevant articles from inception-February 2020. Studies reporting primary data, using either qualitative/quantitative methods or both were eligible for inclusion. Eligible full text articles were independently screened by two reviewers. Data from included studies were independently extracted and synthesized by one reviewer and accuracy verified independently by a second reviewer., Results: This review found 31 articles that met inclusion criteria. Analysis found evidence demonstrating that actigraphic SE was lower, actigraphic nighttime awakenings were greater, and self/parent-reported measures of sleep quality were poorer in children and youth with CF. Study findings related to actigraphic TST, WASO, and self/parent-reported sleep duration were mixed. Thirteen factors demonstrated an association with poor quality sleep., Conclusions: In children and youth with CF, evidence exists of objectively measured sleep disturbance and poor self/parent reported sleep quality. Further longitudinal and comparative research studies are warranted to better understand sleep disturbance in this population. Clinically, sleep assessment should be an integral part of routine CF care., Competing Interests: Conflict of interest None declared., (Copyright © 2021. Published by Elsevier B.V.)

Context: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide., Objectives: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction., Methods: From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses., Results: About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions., Conclusion: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Pediatric nurses care for some of the most vulnerable patients in our healthcare system. Research on health care provider organizational behavior shows that the quality of care nurses provide is directly related to their well-being, influenced by Burnout and job stress, in the workplace. However, most of the research conducted on nursing populations neglects to separately study nurses who care for children. In a resource limited system where health care provider well-being is recognized as a priority, it is important for administrators to understand the environmental and attitudinal work factors most influential to pediatric nurse work outcomes in order to target optimization strategies. The aim of the study was to identify which modifiable work environment factors, e.g., [Incivility, Perceived Organizational Support, Quality of Work-life] make the greatest contribution to the work outcome of Burnout (i.e., Personal Accomplishment, Emotional Exhaustion, Depersonalization) in pediatric nurses. Methods: A cross-sectional survey design was used at a large quaternary care pediatric hospital in Toronto, Canada. We administered a survey to a convenience sample of all registered nurses with >3 months experience in the Pediatric, Cardiac, and Neonatal Intensive Care Units from January 2021-March 2021. Path analysis was used to test our proposed model which was specified a priori based on a review of the literature. Results: 143 nurses completed the survey. Path analysis of the tested model resulted in good fit. Quality of Work-life had the largest direct effect on Work Engagement (β = 0.582, S.E. = 0.111, p < 0.001). Work Engagement had the largest direct effect on Personal Accomplishment (β = 0.68, S.E. = 0.53, p < 0.001). Quality of Work-life had the largest indirect effect on Personal Accomplishment (β = 0.4, S.E. = 0.65, p < 0.001), Emotional Exhaustion (β = -0.33, S.E. = 0.87, p < 0.001), and Depersonalization (β =-0.17, S.E. = 0.41, p = 0.006), respectively. Work Engagement had the largest total effect on Personal Accomplishment (β = 0.68, S.E. = 0.64, p < 0.001) and the third largest total effect on Emotional Exhaustion (β = -0.57, S.E. = 0.83, p < 0.001). Quality of Work-life had the second largest total effect on Work Engagement (β = 0.58, S.E. = 0.11, p < 0.001) indicating that Quality of Work-life is mediated through Work Engagement for its effect on Burnout. Conclusions: Our results indicate work environment and work attitude factors that can provide organizational leadership with a targeted focus to reduce pediatric critical care nurse Burnout, and thus improve provider well-being, in a resource limited system., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Buckley, Berta, Cleverley and Widger.)

Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be challenging to maintain best practices throughout the process. Much of the current guidance describes a scoping review framework or broad ways to conduct a scoping review. However, little detailed guidance exists on how to complete each stage to optimise the process. We present five recommendations based on our experience when conducting a particularly challenging scoping review: (1) engage the expertise of a librarian throughout the process, (2) conduct a truly systematic search, (3) facilitate communication and collaboration, (4) explore new tools or repurpose old ones, and (5) test every stage of the process. These recommendations add to the literature by providing specific and detailed advice on each stage of a scoping review. Our intent is for these recommendations to aid other teams that are undertaking knowledge synthesis projects., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.

Competing Interests: The author has no funding or conflicts of interest to disclose.

Purpose: Evidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the impact of palliative care (PC) provision. We evaluated prevalence and predictors of HI-EOL care in AYAs with cancer in Ontario, Canada. A secondary aim was to evaluate the impact of PC physicians on the intensity of EOL care in AYAs., Methods: A retrospective decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada, was assembled using a provincial registry and linked to population-based health care data. On the basis of previous studies, the primary composite measure HI-EOL care included any of the following: intravenous chemotherapy < 14 days from death, more than one emergency department visit, and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included the most invasive (MI) EOL care (eg, mechanical ventilation < 14 days from death) and PC physician involvement. We determined predictors of outcomes using appropriate regression models., Results: Of 7,122 AYAs, 43.8% experienced HI-EOL care. PC physician involvement (odds ratio [OR], 0.57; 95% CI, 0.51 to 0.63) and older age at death (OR, 0.60; 95% CI, 0.48 to 0.74) were associated with a lower risk of HI-EOL care. AYAs with hematologic malignancies were at highest risk for HI and MI-EOL care. PC physician involvement substantially reduced the odds of mechanical ventilation at EOL (OR, 0.36; 95% CI, 0.30 to 0.43)., Conclusion: A large proportion of AYAs with cancer experience HI-EOL care. Our study provides strong evidence that PC physician involvement can help mitigate the risk of HI and MI-EOL care in AYAs with cancer., Competing Interests: Adam RapoportStock and Other Ownership Interests: MedCurrentPatents, Royalties, Other Intellectual Property: I have intellectual property in a software called KidList. This software, which helps create patient lists, has been sold to a small health care institution in Vancouver, BC, Canada Sumit GuptaConsulting or Advisory Role: Jazz PharmaceuticalsNo other potential conflicts of interest were reported.

Objective: The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care., Study Design: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team., Results: From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction., Conclusion: Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted., Competing Interests: None declared., (Thieme. All rights reserved.)

Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO ® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness. Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months. Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate. Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children. Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores ( n  = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance ( p  < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice. Conclusion: Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs.

Context: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients., Objective: To describe stakeholder perspectives regarding research studies involving children with cancer at the EOL by conduct of a systematic review., Data Sources: We used the following data sources: Ovid Medline, Embase, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Web of Science, and ProQuest (inception until August 2020)., Study Selection: We selected 24 articles published in English that examined perceptions or experiences of research participation for children with cancer at the EOL from the perspectives of children, parents, and health professionals (HPs)., Data Extraction: Two authors independently extracted data, assessed study quality, and performed thematic analysis and synthesis., Results: Eight themes were identified: (1) seeking control; (2) faith, hope, and uncertainty; (3) being a good parent; (4) helping others; (5) barriers and facilitators; (6) information and understanding; (7) the role of HPs in consent and beyond; and (8) involvement of the child in decision-making., Limitations: Study designs were heterogeneous. Only one study discussed palliative care research., Conclusions: Some families participate in EOL research seeking to gain control and sustain hope, despite uncertainty. Other families choose against research, prioritizing quality of life. Parents may perceive research participation as the role of a "good parent" and hope to help others. HPs have positive views of EOL research but fear that parents lack understanding of the purpose of studies and the likelihood of benefit. We identified barriers to research participation and informed consent., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2021 by the American Academy of Pediatrics.)

Background: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families., Methods: We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4)., Results: Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home.", Conclusions: The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.