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Disclosure of Self-Injurious Thoughts and Behaviors Across Sexual and Gender Identities

Pediatrics - Vie, 01/10/2021 - 10:01
OBJECTIVES

Evidence suggests that sexual minority (SM) and gender minority (GM) youth are more likely to experience self-injurious thoughts and behaviors (SITBs) than heterosexual and cisgender youth. A major barrier to identifying and treating SITBs is nondisclosure. In this study, we explored differences in SITB disclosure patterns between SM and GM youth and their heterosexual and cisgender peers. In this study, we further examined the association between discrimination experiences and SITB disclosure.

METHODS

Adolescents (N = 931) completed questionnaires assessing demographics, SITBs, disclosure history, disclosure barriers, future intentions to disclose SITBs, and discrimination history.

RESULTS

Few differences in SITB disclosure patterns emerged between SM and GM youth and heterosexual and cisgender youth (P > .05). SM and GM youth endorsed greater rates of fear of disclosure to and worrying parents, two parent-related barriers ( = 8.11, P = .017; = 7.25, P = .027). GM youth reported greater discrimination experiences than SM youth (F = 6.17, P = .002); discrimination experiences impacted their willingness to disclose future SITBs more so than their SM and heterosexual and cisgender peers (F = 11.58, P < .001). Among the full sample, more discrimination experiences were associated with lower previous disclosure honesty to therapists and pediatricians (r = –0.09 to –0.10, P < .05). Among SM and GM youth, discrimination experiences were associated with lesser odds of disclosing suicide attempts in the future (r = –0.12, P < .05).

CONCLUSIONS

Minority stress experiences may interfere with SITB disclosure, particularly among GM youth. Targeted interventions should be considered to reduce minority stress and support disclosure.

Opioid Use Disorder and Perinatal Outcomes

Pediatrics - Vie, 01/10/2021 - 10:01
OBJECTIVES

Evidence on the perinatal health of mother-infant dyads affected by opioids is limited. Elevated risks of opioid-related harms for people with opioid use disorder (OUD) increase the urgency to identify protective factors for mothers and infants. Our objectives were to determine perinatal outcomes after an OUD diagnosis and associations between opioid agonist treatment and birth outcomes.

METHODS

We conducted a population-based retrospective study among all women with diagnosed OUD before delivery and within the puerperium period in British Columbia, Canada, between 2000 and 2019 from provincial health administrative data. Controlling for demographic and clinical characteristics, we determined associations of opioid agonist treatment on birth weight, gestational age, infant disorders related to gestational age and birth weight, and neonatal abstinence syndrome via logistic regression.

RESULTS

The population included 4574 women and 6720 live births. Incidence of perinatal OUD increased from 166 in 2000 to 513 in 2019. Compared with discontinuing opioid agonist treatment during pregnancy, continuous opioid agonist treatment reduced odds of preterm birth (adjusted odds ratio: 0.6; 95% confidence interval: 0.4–0.8) and low birth weight (adjusted odds ratio: 0.4; 95% confidence interval: 0.2–0.7). Treatment with buprenorphine-naloxone (compared with methadone) reduced odds of each outcome including neonatal abstinence syndrome (adjusted odds ratio: 0.6; 95% confidence interval: 0.4–0.9).

CONCLUSIONS

Perinatal OUD in British Columbia tripled in incidence over a 20-year period. Sustained opioid agonist treatment during pregnancy reduced the risk of adverse birth outcomes, highlighting the need for expanded services, including opioid agonist treatment to support mothers and infants.

Metronidazole-Induced Hepatitis in a Teenager With Xeroderma Pigmentosum and Trichothiodystrophy Overlap

Pediatrics - Vie, 01/10/2021 - 10:01

A teenage girl had the rare combined phenotype of xeroderma pigmentosum and trichothiodystrophy, resulting from mutations in the XPD (ERCC2) gene involved in nucleotide excision repair (NER). After treatment with antibiotics, including metronidazole for recurrent infections, she showed signs of acute and severe hepatotoxicity, which gradually resolved after withdrawal of the treatment. Cultured skin fibroblasts from the patient revealed cellular sensitivity to killing by metronidazole compared with cells from a range of other donors. This reveals that the metronidazole sensitivity was an intrinsic property of her cells. It is well recognized that patients with Cockayne syndrome, another NER disorder, are at high risk of metronidazole-induced hepatotoxicity, but this had not been reported in individuals with other NER disorders. We would urge extreme caution in the use of metronidazole in the management of individuals with the xeroderma pigmentosum and trichothiodystrophy overlap or trichothiodystrophy phenotypes.

Burnout and Perceptions of Stigma and Help-Seeking Behavior Among Pediatric Fellows

Pediatrics - Vie, 01/10/2021 - 10:01
BACKGROUND AND OBJECTIVES

Although burnout has been studied extensively among students and residents, in few studies have researchers examined burnout among fellowship trainees. We measured burnout among fellows in our freestanding children’s hospital and evaluated fellows' perceptions of stigma around (and willingness to seek treatment for) psychological distress. The objectives are as follows: to (1) measure burnout among pediatric fellows, (2) assess fellows' perceptions of stigma around help seeking for mental illness, and (3) examine the relationship between burnout and willingness to seek behavioral health counseling.

METHODS

We distributed a 48-item inventory to all 288 fellows in our pediatric center. Items included the Maslach Burnout Inventory and Likert-type matrices to assess attitudes toward behavioral health treatment and associated stigma. We used 2-sampled t-tests to associate burnout with willingness to seek mental health treatment.

RESULTS

A total of 152 fellows (52%) responded, of whom 53% met the threshold for burnout. Most reported believing that their program directors (78%), attending physicians (72%), and patients (82%) hold negative attitudes about mental illness and its treatment; 68% believed that employers would reject their application if they knew they sought counseling. Fellows with burnout were more likely to believe that others in the clinical learning environment hold negative views of help seeking for behavioral health (odds ratio 1.2–1.9).

CONCLUSIONS

Just over one-half of the pediatric fellows in our center meet the threshold for burnout. They also experience significant workplace-based stigma around help seeking for psychological distress. Fellows with burnout are more likely than their peers to perceive significant stigma around help seeking for their distress, making them a particularly at-risk learner population.

Comparative Effectiveness of Clinical and Community-Based Approaches to Healthy Weight

Pediatrics - Vie, 01/10/2021 - 10:01
OBJECTIVES

The objective was to evaluate if 2 pediatric weight management interventions delivered to Hispanic, low-income children (one in a health center the other in a Young Men’s Christian Association) were effective in reducing BMI. We hypothesized that they would be equally effective.

METHODS

A total 407 children aged 6 to 12 years with BMI ≥ 85th percentile receiving care at 2 health centers were randomly assigned to a healthy weight clinic (HWC) at the health center or to a modified Healthy Weight and Your Child (M-HWYC) intervention delivered in Young Men’s Christian Associations. A total of 4037 children served as the comparison group. We completed a noninferiority test comparing the M-HWYC with the HWC, which was supported if the bounds of the 90% confidence interval (CI) for the difference in percentage of the 95th percentile (%BMIp95) change did not contain what we considered a minimally clinically important difference, on the basis of previous data (0.87). Then, using linear mixed models, we assessed yearly changes in BMI among intervention participants compared with the comparison sites.

RESULTS

The mean difference in %BMIp95 between the M-HWYC and the HWC was 0.75 (90% CI: 0.07 to 1.43), which did not support noninferiority. Compared with the comparison sites, per year, children in the HWC had a –0.23 (95% CI: –0.36 to –0.10) decrease in BMI and a –1.03 (95% CI –1.61 to –0.45) %BMIp95 decrease. There was no BMI effect in the M-HWYC.

CONCLUSIONS

We were unable to establish noninferiority of the M-HWYC. The HWC improved BMI, offering an effective treatment of those disproportionately affected.

Neonatal Stress, Health, and Development in Preterms: A Systematic Review

Pediatrics - Vie, 01/10/2021 - 10:01
CONTEXT

An overview of the full range of neonatal stressors and the associated clinical, laboratory, and imaging outcomes regarding infants’ health and development may contribute to the improvement of neonatal care.

OBJECTIVE

To systematically review existing literature on the associations between all kinds of neonatal stressors and the health and development of preterm infants.

DATA SOURCES

Data sources included Embase, Medline, PsycINFO, the Cumulative Index to Nursing and Allied Health Literature, and reference lists.

STUDY SELECTION

Studies were eligible if they included a measure of neonatal stress during the NICU stay, reported clinical, laboratory, and/or imaging outcomes regarding health and/or development on discharge from the NICU or thereafter, included preterm infants, and were written in English or Dutch.

DATA EXTRACTION

Two reviewers independently screened the sources and extracted data on health and development. Study quality was assessed by using the Newcastle-Ottawa Quality Assessment Scale.

RESULTS

We identified 20 articles that reported on neonatal stress associated negatively with clinical outcomes, including cognitive, motor, and emotional development, and laboratory and imaging outcomes, including epigenetic alterations, hypothalamic-pituitary-adrenal axis functioning, and structural brain development. We found no evidence regarding associations with growth, cardiovascular health, parent-infant interaction, the neonatal immune system, and the neonatal microbiome.

LIMITATIONS

The studies were all observational and used different definitions of neonatal stress.

CONCLUSIONS

Neonatal stress has a profound impact on the health and development of preterm infants, and physicians involved in their treatment and follow-up should be aware of this fact.

Influenza Antiviral Treatment and Length of Stay

Pediatrics - Vie, 01/10/2021 - 10:01
BACKGROUND

Antiviral treatment is recommended for hospitalized patients with suspected and confirmed influenza, but evidence is limited among children. We evaluated the effect of antiviral treatment on hospital length of stay (LOS) among children hospitalized with influenza.

METHODS

We included children <18 years hospitalized with laboratory-confirmed influenza in the US Influenza Hospitalization Surveillance Network. We collected data for 2 cohorts: 1 with underlying medical conditions not admitted to the ICU (n = 309, 2012–2013) and an ICU cohort (including children with and without underlying conditions; n = 299, 2010–2011 to 2012–2013). We used a Cox model with antiviral receipt as a time-dependent variable to estimate hazard of discharge and a Kaplan–Meier survival analysis to determine LOS.

RESULTS

Compared with those not receiving antiviral agents, LOS was shorter for those treated ≤2 days after illness onset in both the medical conditions (adjusted hazard ratio: 1.37, P = .02) and ICU (adjusted hazard ratio: 1.46, P = .007) cohorts, corresponding to 37% and 46% increases in daily discharge probability, respectively. Treatment ≥3 days after illness onset had no significant effect in either cohort. In the medical conditions cohort, median LOS was 3 days for those not treated versus 2 days for those treated ≤2 days after symptom onset (P = .005).

CONCLUSIONS

Early antiviral treatment was associated with significantly shorter hospitalizations in children with laboratory-confirmed influenza and high-risk medical conditions or children treated in the ICU. These results support Centers for Disease Control and Prevention recommendations for prompt empiric antiviral treatment in hospitalized patients with suspected or confirmed influenza.

Concurrent Use of E-cigarettes, Combustible Cigarettes, and Marijuana

Pediatrics - Vie, 01/10/2021 - 10:01
OBJECTIVE

Subgroups of adolescent single and dual e-cigarette and cigarette users have been identified, but usage patterns have changed in recent years, and there has been an increase in marijuana use. Research is needed with current data to identify subgroups of use including marijuana and determine their behavioral correlates.

METHODS

We cross classified ever and recent use of e-cigarettes, combustible cigarettes, and marijuana among US high school students in the 2019 Youth Risk Behavior Survey (YRBS), providing 8 different groups. Levels of 14 risk and protective factors were compared across groups in general linear models with demographic covariates using omnibus tests, pairwise comparisons, and planned contrasts. Replicability was tested through identical analyses for 2017 YRBS data.

RESULTS

The nonuser group was 43.9% of the sample. The most frequent user groups were triple users (ever-use proportion: 16.9%), dual (e-cigarette and marijuana) users (15.8%), and exclusive e-cigarette users (13.2%). For risk profiles on levels of psychosocial variables, the triple-user group was typically elevated above all other groups. Exclusive e-cigarette users were above nonusers in risk profile but below dual users (both cigarettes and marijuana). Results were similar for ever use and recent use. The patterning of results in 2019 YRBS data were closely replicated in 2017 YRBS data.

CONCLUSIONS

Co-occurrence of e-cigarette, cigarette, and marijuana use is currently substantial among adolescents and is associated with an elevated psychosocial risk profile. This has implications for both epidemiology and prevention studies. Further research is needed to study prevalence and identify pathways to triple use.

High-Intensity Interval Training and Cardiometabolic Risk Factors in Children: A Meta-analysis

Pediatrics - Vie, 01/10/2021 - 10:01
CONTEXT

High-intensity interval training (HIIT) has been widely used to prevent and treat cardiovascular risk factors in adolescents and adults; nevertheless, the available evidence in children is scarce.

OBJECTIVE

To synthesize evidence regarding the effectiveness of HIIT interventions on improving cardiovascular risk factors and cardiorespiratory fitness (CRF) in children from 5 to 12 years old.

DATA SOURCES

We searched 5 databases, Medline, Embase, SPORTDiscus, the Cochrane Library, and Web of Science.

STUDY SELECTION

Randomized controlled trials (RCTs) evaluating the effectiveness of HIIT interventions on cardiometabolic risk factors and CRF in children were included.

DATA EXTRACTION

Meta-analyses were conducted to determine the effect of HIIT on body composition, cardiometabolic and CRF variables in comparison with nontraining control groups.

RESULTS

A total of 11 RCTs and 512 participants were included. The results of the meta-analysis revealed a significant improvement in peak oxygen uptake (standardized mean difference [SMD] = 0.70, 95% confidence interval [CI] = 0.28 to 1.12; P = 0.001], in total cholesterol [SMD = –1.09, 95% CI = –1.88 to –0.30; P = 0.007], in low-density lipoprotein cholesterol [SMD = –1.28, 95% CI = –2.34 to –0.23; P = 0.017] and triglycerides [SMD = –0.71, 95% CI = –1.15 to –0.28; P = 0.001) levels.

LIMITATIONS

Because of the small number of available RCTs, it was not possible to conduct a subgroup analysis or a linear meta-regression analysis.

CONCLUSIONS

HIIT is a feasible and time-efficient approach for improving CRF, total cholesterol, low-density lipoprotein cholesterol, and triglycerides levels in children.

Cognitive and Executive Function in Congenital Heart Disease: A Meta-analysis

Pediatrics - Vie, 01/10/2021 - 10:01
CONTEXT

Cognitive function and executive function (EF) impairments contribute to the long-term burden of congenital heart disease (CHD). However, the degree and profile of impairments are insufficiently described.

OBJECTIVE

To systematically review and meta-analyze the evidence on cognitive function and EF outcomes in school-aged children operated for CHD and identify the risk factors for an unfavorable outcome.

DATA SOURCES

Cochrane, Embase, Medline, and PsycINFO.

STUDY SELECTION

Original peer-reviewed studies reporting cognitive or EF outcome in 5- to 17-year old children with CHD after cardiopulmonary bypass surgery.

DATA EXTRACTION

Results of IQ and EF assessments were extracted, and estimates were transformed to means and SE. Standardized mean differences were calculated for comparison with healthy controls.

RESULTS

Among 74 studies (3645 children with CHD) reporting total IQ, the summary estimate was 96.03 (95% confidence interval: 94.91 to 97.14). Hypoplastic left heart syndrome and univentricular CHD cohorts performed significantly worse than atrial and ventricular septum defect cohorts (P = .0003; P = .027). An older age at assessment was associated with lower IQ scores in cohorts with transposition of the great arteries (P = .014). Among 13 studies (774 children with CHD) reporting EF compared with controls, the standardized mean difference was –0.56 (95% confidence interval: –0.65 to –0.46) with no predilection for a specific EF domain or age effect.

LIMITATIONS

Heterogeneity between studies was large.

CONCLUSIONS

Intellectual impairments in CHD are frequent, with severity and trajectory depending on the CHD subtype. EF performance is poorer in children with CHD without a specific EF profile. The heterogeneity in studied populations and applied assessments is large. A uniform testing guideline is urgently needed.

Six Month Follow-up of Patients With Multi-System Inflammatory Syndrome in Children

Pediatrics - Vie, 01/10/2021 - 10:01
BACKGROUND AND OBJECTIVES

Myocardial dysfunction and coronary abnormalities are prominent features of multisystem inflammatory syndrome in children (MIS-C). In this study we aim to evaluate the early and midterm outcomes of MIS-C.

METHODS

This is a longitudinal 6-month cohort study of all children admitted and treated for MIS-C from April 17 to June 20, 2020. Patients were followed ~2 weeks, 8 weeks, and 6 months postadmission, with those with coronary aneurysms evaluated more frequently.

RESULTS

Acutely, 31 (62%) patients required intensive care with vasoactive support, 26 (52%) had left ventricular (LV) systolic dysfunction, 16 (32%) had LV diastolic dysfunction, 8 (16%) had coronary aneurysms (z score ≥2.5), and 4 (8%) had coronary dilation (z score <2.5). A total of 48 patients (96%) received immunomodulatory treatment. At 2 weeks, there was persistent mild LV systolic dysfunction in 1 patient, coronary aneurysms in 2, and dilated coronary artery in 1. By 8 weeks through 6 months, all patients returned to functional baseline with normal LV systolic function and resolution of coronary abnormalities. Cardiac MRI performed during recovery in select patients revealed no myocardial edema or fibrosis. Some patients demonstrated persistent diastolic dysfunction at 2 weeks (5, 11%), 8 weeks (4, 9%), and 6 months (1, 4%).

CONCLUSIONS

Children with MIS-C treated with immunomodulators have favorable early outcomes with no mortality, normalization of LV systolic function, recovery of coronary abnormalities, and no inflammation or scarring on cardiac MRI. Persistence of diastolic dysfunction is of uncertain significance and indicates need for larger studies to improve understanding of MIS-C. These findings may help guide clinical management, outpatient monitoring, and considerations for sports clearance.

Should a Healthcare System Facilitate Racially Concordant Care for Black Patients?

Pediatrics - Vie, 01/10/2021 - 10:01

Addressing racial disparities in health outcomes is an urgent priority for many health care organizations, leading health care managers to explore the potential for organization-level interventions to yield substantive health gains. In recent literature, it is suggested that Black patients who are treated by Black physicians may achieve superior health outcomes in some settings. In this case discussion, we consider a case in which a medical director considers implementing a voluntary program to promote racially concordant care for Black patients. Commentators consider the precedent for such a program, both in current informal care networks and 20th century medical history, as well as the burden such a program may place on Black physicians and the risks of reducing patients’ intersectional identities to be solely about race. A subset of commentators suggest that these risks are mitigated by the voluntary nature of the program, whereas others offer caution about relying solely on Black physicians to remedy health disparities. Others view multiple paths as morally defensible but emphasize the need for managers to take proactive steps to communicate and evaluate their choices in the face of such a complex social challenge.

Six Stages of Engagement in ADHD Treatment Described by Diverse, Urban Parents

Pediatrics - Vie, 01/10/2021 - 10:01
BACKGROUND

Attention-deficit/hyperactivity disorder (ADHD) is a common neurodevelopmental condition in children. Although ADHD is treatable, barriers remain to engagement in treatment, especially among socioeconomically disadvantaged and racial and ethnic minority families. Our goal was to examine the process by which families engage in ADHD treatment and to identify targets for an intervention to improve engagement in care.

METHODS

We conducted in-depth semistructured qualitative interviews with 41 parents of diverse youth aged 3 to 17 years old in treatment of ADHD at an urban safety net hospital. Parents were asked about their journey through diagnosis and treatment, community attitudes about ADHD, and other factors influencing treatment access and decision-making. Transcripts were analyzed by using thematic analysis.

RESULTS

Of children with ADHD, 69.2% were male, 57.7% were Black or African American, and 38.5% were of Hispanic, Latino, or Spanish origin. Parents were 92.7% female, were 75.6% English speaking, and had a median income of $20 000. Parents described 6 stages to the process of engaging in care for their child’s ADHD, which unfolded like a developmental process: (1) normalization and hesitation, (2) fear and stigmatization, (3) action and advocacy, (4) communication and navigation, (5) care and validation, and (6) preparation and transition. Barriers often occurred at points of stage mismatch between parents and providers and/or systems. Difficulty resolving an earlier stage interfered with the progression through subsequent stages.

CONCLUSIONS

The 6 stages framework could be used to develop new strategies to measure engagement and to design family-centered interventions to facilitate engagement in ADHD treatment.

Economic Trends of Racial Disparities in Pediatric Postappendectomy Complications

Pediatrics - Vie, 01/10/2021 - 10:01
BACKGROUND

Despite unparalleled advances in perioperative medicine, surgical outcomes remain poor for racial minority patients relative to their white counterparts. Little is known about the excess costs to the health care system related to these disparities.

METHODS

We performed a retrospective analysis of data from the Nationwide Inpatient Sample between 2001 and 2018. We included children younger than 18 years admitted with appendicitis who underwent an appendectomy during their hospital stay. We examined the inflation-adjusted hospital costs attributable to the racial disparities in surgical complications and perforation status, focusing on differences between non-Hispanic white patients and non-Hispanic Black patients.

RESULTS

We included 100 639 children who underwent appendectomy, of whom 89.9% were non-Hispanic white and 10.1% were non-Hispanic Black. Irrespective of perforation status at presentation, surgical complications were consistently higher for Black compared with white children, with no evidence of narrowing of the racial disparity gap over time. Black children consistently incurred higher hospital costs (median difference: $629 [95% confidence interval: $500–$758; P < .01). The total inflation-adjusted hospital costs for Black children were $518 658 984, and $59 372 044 (11.41%) represented the excess because of the racial disparities in perforation rates.

CONCLUSIONS

Although all patients had a progressive decline in post appendectomy complications, Black children consistently had higher rates of complications and perforation, imposing a significant economic burden. We provide an empirical economic argument for sustained efforts to reduce racial disparities in pediatric surgical outcomes, notwithstanding that eliminating these disparities is simply the right thing to do.

IgA Nephropathy as the Initial Presentation of Celiac Disease in an Adolescent

Pediatrics - Vie, 01/10/2021 - 10:01

Immunoglobulin A (IgA) nephropathy (Berger’s disease) is the most common glomerulonephritis worldwide. The disease typically is chronic and lifelong and eventually progresses to impaired renal function in a substantial proportion of cases. It has been known for some time that there is a correlation between IgA nephropathy and celiac disease, but until now it has remained unclear whether treatment of the underlying celiac disease has any meaningful impact on the progression of the renal disease. Therefore, until now, screening for celiac disease in patients presenting with IgA nephropathy has not been universally recommended in the absence of suggestive gastrointestinal symptoms. This report describes a case of IgA nephropathy in an adolescent boy that turned out to be the initial presentation of celiac disease. More importantly, it documents the complete laboratory normalization of his renal anomalies at 5-year follow-up after treatment of his celiac disease with implementation of a gluten-free diet. This case highlights the importance of awareness that suspected IgA nephropathy, even in the absence of gastrointestinal symptoms, should prompt screening for underlying celiac disease as a potential, and possibly treatable, cause.

Patient, Provider, and Health Care System Characteristics Associated With Overuse in Bronchiolitis

Pediatrics - Vie, 01/10/2021 - 10:01
BACKGROUND AND OBJECTIVES

The American Academy of Pediatrics recommends against the routine use of β-agonists, corticosteroids, antibiotics, chest radiographs, and viral testing in bronchiolitis, but use of these modalities continues. Our objective for this study was to determine the patient, provider, and health care system characteristics that are associated with receipt of low-value services.

METHODS

Using the Virginia All-Payers Claims Database, we conducted a retrospective cross-sectional study of children aged 0 to 23 months with bronchiolitis (code J21, International Classification of Diseases, 10th Revision) in 2018. We recorded medications within 3 days and chest radiography or viral testing within 1 day of diagnosis. Using Poisson regression, we identified characteristics associated with each type of overuse.

RESULTS

Fifty-six percent of children with bronchiolitis received ≥1 form of overuse, including 9% corticosteroids, 17% antibiotics, 20% β-agonists, 26% respiratory syncytial virus testing, and 18% chest radiographs. Commercially insured children were more likely than publicly insured children to receive a low-value service (adjusted prevalence ratio [aPR] 1.21; 95% confidence interval [CI]: 1.15–1.30; P < .0001). Children in emergency settings were more likely to receive a low-value service (aPR 1.24; 95% CI: 1.15–1.33; P < .0001) compared with children in inpatient settings. Children seen in rural locations were more likely than children seen in cities to receive a low-value service (aPR 1.19; 95% CI: 1.11–1.29; P < .0001).

CONCLUSIONS

Overuse in bronchiolitis remains common and occurs frequently in emergency and outpatient settings and rural locations. Quality improvement initiatives aimed at reducing overuse should include these clinical environments.

Educational Priorities for Providing End-of-Life Care: Parent Perspectives

Pediatrics - Vie, 01/10/2021 - 10:01
OBJECTIVES

Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child’s end-of-life (EOL) care.

METHODS

English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process.

RESULTS

Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child’s EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges.

CONCLUSIONS

We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.

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