Competencies for Psychology Practice in Pediatric Palliative Care.

OBJECTIVE: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists practicing in PPC, support their systematic inclusion as part of PPC teams, and advance trainee knowledge of PPC principles and skills, the PPC Psychology Working Group sought to develop core competencies for psychologists in this subspecialty. METHODS: A Working Group of pediatric psychologists with expertise in PPC met monthly to review literature and existing competencies in pediatrics, pediatric and subspecialty psychology, adult palliative care, and PPC subspecialties. Using the modified competency cube framework, the Working Group drafted core competencies for PPC psychologists. Interdisciplinary review was conducted by a diverse group of PPC professionals and parent advocates, and competencies were revised accordingly. RESULTS: The six competency clusters include Science, Application, Education, Interpersonal, Professionalism, and Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and behavioral anchors (i.e., examples of concrete application). Reviewer feedback highlighted clarity and thoroughness of competencies and suggested additional consideration of siblings and caregivers, spirituality, and psychologists' own positionality. CONCLUSIONS: Newly developed competencies for PPC psychologists highlight unique contributions to PPC patient care and research and provide a framework for highlighting psychology's value in this emerging subspecialty. Competencies help to advocate for inclusion of psychologists as routine members of PPC teams, standardize best practices among the PPC workforce, and provide optimal care for youth with serious illness and their families.

Medical traumatic stress in cystic fibrosis: A qualitative analysis.

BACKGROUND: People living with cystic fibrosis (PwCF) face a lifetime of potentially traumatic illness-related experiences that can lead to posttraumatic stress symptoms. Existing criteria for this type of posttraumatic stress, called medical traumatic stress (MTS), may not fully capture the CF experience. In this study we aimed to explore: 1) illness-related experiences perceived as traumatic in the setting of CF, 2) perceived MTS symptoms in PwCF, and 3) perceived health-related functional impairments from MTS. METHODS: Informed by our aims, we developed and piloted guides for semi-structured interviews and focus groups with PwCF, family members of PwCF, and CF medical providers. We then conducted a series of interviews and focus groups. The qualitative analytical process followed Deterding and Waters' three stages of flexible coding for in-depth interviews, generating key themes and sub-themes in each domain of study inquiry. RESULTS: We recruited 51 participants, including 24 PwCF, 7 family members of PwCF, and 20 CF care team members. Illness-related experiences perceived as traumatic were often characterized by themes of loss of agency, threats of bodily harm, and shifts in identity. Prominent MTS symptoms included shame, survivor guilt, burden guilt, germaphobia, and symptom panic. Health-related themes of functional impairments perceived to result from MTS included poor adherence and strained relationships between providers and patients/families. CONCLUSIONS: This is the first study to explore the specific experiences of MTS in PwCF. It highlights the need for screening that includes these specific exposure types and symptoms, which may be mitigatable with medical trauma-focused interventions.

The Cellie Coping Kit for children with Eosinophilic Esophagitis: Feasibility, acceptability, and preliminary outcomes.

Children with eosinophilic esophagitis (EoE) are faced with ongoing treatments that can impact their wellbeing. There are no evidence-based resources that families can implement independently to cope with EoE-related stressors. This study aimed to examine acceptability, feasibility, and preliminary outcomes of the newly developed Cellie Coping Kit for Children with EoE intervention. Forty child-caregiver dyads completed a baseline assessment (T1) and initiated the intervention; 30 (75%) child participants and 33 (82.5%) caregivers were retained to follow-up (T2). Of those who completed the T2 assessment, most reported that the intervention was easy to use (>90%) and would recommend the intervention to others (>90%). The intervention was feasible: >70% used the kit, and most indicated they would use it again (>75%). More than half of families reported learning new information and/or coping strategies. No statistically significant changes were identified in comparing T1 and T2 coping and health-related quality of life. These findings suggest that the Cellie Coping Kit for Children with EoE is a promising intervention in that it was well accepted, feasible, and helped many families learn novel strategies on how to manage EoE challenges. Future research should examine how to strengthen the intervention to achieve longer-term targeted outcomes.

Pediatric Medical Traumatic Stress in Inflammatory Bowel Disease, Pancreatitis, and Cystic Fibrosis.

OBJECTIVES: Known as pediatric medical traumatic stress (PMTS), posttraumatic stress symptoms from medical experiences have not been explored in children with chronic gastrointestinal diseases. This cross-sectional study of children and adolescents with inflammatory bowel disease, chronic pancreatitis and cystic fibrosis, aimed to (1) estimate the prevalence of medical potentially traumatic events (PTEs) and PMTS, (2) explore potential risk factors for PMTS, and (3) explore potential consequences of PMTS. METHODS: This cross-sectional study used validated, self-report measures to evaluate PTEs and PMTS. Descriptive statistics and regression analyses were used to achieve study objectives. RESULTS: Over two-thirds of children reported a medical potentially traumatic event (91 of 132, 69%). Forty-eight had PMTS symptoms (36%). PMTS was associated with medication burden, emergency and intensive care visits, and parent posttraumatic stress disorder in multivariate analysis. Potential consequences associated with PMTS included school absenteeism, home opioid use, poor quality of life, and parent missed work. CONCLUSIONS: A substantial portion of our cohort reported medical PTEs and PMTS. The exploratory analysis identified potential associations between PMTS and illness factors, parent posttraumatic stress disorder, and functional impairments. Further studies of PMTS detection, prevention and treatment are integral to optimizing these children's health and quality of life.

Effects of Trauma and Anxiety on Adherence in Pediatric Type 1 Diabetes.

Background: Psychiatric factors such as depression, anxiety, and life stressors have been shown to negatively affect diabetes self-management and A1C in children and adolescents. However, less is known about how trauma exposure and symptoms of post-traumatic stress disorder (PTSD) may affect type 1 diabetes. Objectives: To determine the rates of trauma exposure and PTSD symptoms in patients aged 7-21 years with type 1 diabetes and to examine the relationships among trauma exposure, PTSD, anxiety, depression, and diabetes self-management. Methods: Patients underwent standardized psychiatric screening questionnaires during clinic visits. A1C at goal was defined as <7.0%, and behavioral adherence was defined as specific parameters of blood glucose monitoring. χ2 and Fisher exact tests were used to assess the relationships among trauma, PTSD, anxiety, and behavioral adherence. ANOVA was conducted to examine group differences between A1C and the presence of suicidal ideation. Results: Of the participants, 38.4% (n = 99, mean age 13.8 ± 3.5 years, 51.5% female) had trauma symptoms and functional impairment concerning for PTSD. Rates of trauma secondary to accidental injury, medical traumatic stress, natural disaster, and witness to family violence were 28.3, 22.2, 10.1, and 6.1%, respectively. Neither PTSD nor anxiety nor depression symptoms were associated with behavioral nonadherence (P = 0.546, P = 0.337, and P = 0.697, respectively), but the subscales for significant school avoidance and generalized anxiety disorders were associated with behavioral nonadherence (P = 0.023 and P = 0.032, respectively). Those who reported suicidal ideation had higher mean A1C than those who did not (A1C 8.9 vs. 8.3, P = 0.047). Conclusion: Although trauma was common among youth with type 1 diabetes, neither trauma nor PTSD was associated with changes to self-management. However, certain forms of anxiety and suicidal ideation were associated with poor self-management and higher A1C, respectively.

COVID-19 Unmasked Global Collaboration Protocol: longitudinal cohort study examining mental health of young children and caregivers during the pandemic.

BACKGROUND: Early empirical data shows that school-aged children, adolescents and adults are experiencing elevated levels of anxiety and depression during the COVID-19 pandemic. Currently, there is very little research on mental health outcomes for young children. OBJECTIVES: To describe the formation of a global collaboration entitled, 'COVID-19 Unmasked'. The collaborating researchers aim to (1) describe and compare the COVID-19 related experiences within and across countries; (2) examine mental health outcomes for young children (1 to 5 years) and caregivers over a 12-month period during the COVID-19 pandemic; (3) explore the trajectories/time course of psychological outcomes of the children and parents over this period and (4) identify the risk and protective factors for different mental health trajectories. Data will be combined from all participating countries into one large open access cross-cultural dataset to facilitate further international collaborations and joint publications. METHODS: COVID-19 Unmasked is an online prospective longitudinal cohort study. An international steering committee was formed with the aim of starting a global collaboration. Currently, partnerships have been formed with 9 countries (Australia, Cyprus, Greece, the Netherlands, Poland, Spain, Turkey, the UK, and the United States of America). Research partners have started to start data collection with caregivers of young children aged 1-5 years old at baseline, 3-months, 6-months, and 12-months. Caregivers are invited to complete an online survey about COVID-19 related exposure and experiences, child's wellbeing, their own mental health, and parenting. DATA ANALYSIS: Primary study outcomes will be child mental health as assessed by scales from the Patient-Reported Outcomes Measurement Information System - Early Childhood (PROMIS-EC) and caregiver mental health as assessed by the Depression Anxiety Stress Scale (DASS-21). The trajectories/time course of mental health difficulties and the impact of risk and protective factors will be analysed using hierarchical linear models, accounting for nested effects (e.g. country) and repeated measures.

Antecedentes: Los primeros datos empíricos muestran que los niños en edad escolar, los adolescentes y los adultos están experimentando niveles elevados de ansiedad y depresión durante la pandemia de COVID-19. Actualmente, hay muy poca investigación sobre los resultados de salud mental de los niños pequeños. Objetivos: Describir la formación de una colaboración global titulada 'COVID-19 Desenmascarado'. Los investigadores colaboradores tienen como objetivos (1) describir y comparar las experiencias relacionadas con COVID-19 dentro y entre países; (2) examinar los resultados de salud mental de los niños pequeños (de 1 a 5 años) y los cuidadores durante un período de 12 meses durante la pandemia de COVID-19; (3) explorar las trayectorias/temporalidad de los resultados psicológicos de los niños y los padres durante este período e (4) identificar los factores de riesgo y de protección para las diferentes trayectorias de salud mental. Los datos de todos los países participantes se combinarán en un gran conjunto de datos transculturales de acceso abierto para facilitar más colaboraciones internacionales y publicaciones conjuntas. Métodos: COVID-19 Desenmascarado es un estudio de cohorte longitudinal prospectivo en línea. Se formó un comité directivo internacional con el objetivo de iniciar una colaboración global. Actualmente, se han formado asociaciones con 9 países (Australia, Chipre, Grecia, Países Bajos, Polonia, España, Turquía, Reino Unido y Estados Unidos de América). Los socios de investigación han comenzado la recopilación de datos con los cuidadores de niños pequeños de 1 a 5 años al inicio, a los 3 meses, a los 6 meses y a los 12 meses. Se invita a los cuidadores a completar una encuesta en línea sobre la exposición y las experiencias relacionadas con COVID-19, el bienestar del niño, su propia salud mental y parentalidad. Análisis de datos: Los resultados primarios del estudio serán la salud mental infantil según la evaluación de las escalas del Sistema De Información De medición de Resultados Informados Por El Paciente ­ Primera Infancia (PROMIS-EC) y la salud mental del cuidador según la evaluación de la Escala de estrés, ansiedad y depresión (DASS-21). Las trayectorias/temporalidad de las dificultades de salud mental y el impacto de los factores de riesgo y de protección se analizarán utilizando modelos lineales jerárquicos, teniendo en cuenta los efectos anidados (por ejemplo, el país) y las medidas repetidas.

Topical Review: Medical Trauma During Early Childhood.

OBJECTIVE: Early childhood is a high-risk period for exposure to traumatic medical events due to injury/illness. It is also one of the most important and vulnerable periods due to rapid development in neurobiological systems, attachment relationships, cognitive and linguistic capacities, and emotion regulation. The aim of this topical review is to evaluate empirical literature on the psychological impact of medical trauma during early childhood (0-6 years) to inform models of clinical care for assessing, preventing, and treating traumatic stress following injury/illness. METHODS: Topical review of empirical and theoretical literature on pediatric medical traumatic stress (PMTS) during early childhood. RESULTS: There are important developmental factors that influence how infants and young children perceive and respond to medical events. The emerging literature indicates that up to 30% of young children experience PMTS within the first month of an acute illness/injury and between 3% and 10% develop posttraumatic stress disorder. However, significant knowledge gaps remain in our understanding of psychological outcomes for infants and young children, identification of risk-factors and availability of evidence-based interventions for medical trauma following illness. CONCLUSIONS: This topical review on medical trauma during early childhood provides: (a) definitions of key medical trauma terminology, (b) discussion of important developmental considerations, (c) summary of the empirical literature on psychological outcomes, risk factors, and interventions, (d) introduction to a stepped-model-of-care framework to guide clinical practice, and (e) summary of limitations and directions for future research.

Development of an international data repository and research resource: the Prospective studies of Acute Child Trauma and Recovery (PACT/R) Data Archive.

Background: Studies that identify children after acute trauma and prospectively track risk/protective factors and trauma responses over time are resource-intensive; small sample sizes often limit power and generalizability. The Prospective studies of Acute Child Trauma and Recovery (PACT/R) Data Archive was created to facilitate more robust integrative cross-study data analyses. Objectives: To (a) describe creation of this research resource, including harmonization of key variables; (b) describe key study- and participant-level variables; and (c) examine retention to follow-up across studies. Methods: For the first 30 studies in the Archive, we described study-level (design factors, retention rates) and participant-level (demographic, event, traumatic stress) variables. We used Chi square or ANOVA to examine study- and participant-level variables potentially associated with retention. Results: These 30 prospective studies (N per study = 50 to 568; overall N = 5499) conducted by 15 research teams in 5 countries enrolled children exposed to injury (46%), disaster (24%), violence (13%), traffic accidents (10%), or other acute events. Participants were school-age or adolescent (97%), 60% were male, and approximately half were of minority ethnicity. Using harmonized data from 22 measures, 24% reported significant traumatic stress ≥1 month post-event. Other commonly assessed outcomes included depression (19 studies), internalizing/externalizing symptoms (19), and parent mental health (19). Studies involved 2 to 5 research assessments; 80% of participants were retained for ≥2 assessments. At the study level, greater retention was associated with more planned assessments. At the participant level, adolescents, minority youth, and those of lower socioeconomic status had lower retention rates. Conclusion: This project demonstrates the feasibility and value of bringing together traumatic stress research data and making it available for re-use. As an ongoing research resource, the Archive can promote 'FAIR' data practices and facilitate integrated analyses to advance understanding of child traumatic stress.

Antecedentes: Los estudios que identifican niños luego de la exposición a trauma agudo y realizan un seguimiento prospectivo para identificar factores protectores o de riesgo, y respuestas al trauma en el tiempo requieren una gran cantidad de recursos; el tamaño pequeño de las muestras frecuentemente limita su poder y generalización. El Banco de Información de los Estudios Prospectivos sobre Trauma Agudo y Recuperación en el Niño (PACT/R por sus siglas en inglés) se creó para facilitar un análisis de datos más robusto e integrativo entre los estudios.Objetivos: a) Describir la creación de este recurso de investigación, incluyendo la armonización de variables clave; b) describir las variables clave a nivel de estudios y de participantes; y c) evaluar la permanencia del seguimiento en los estudios.Métodos: Describimos las variables 'nivel de estudio' (diseño, factores, tasas de permanencia) y 'nivel de participantes' (demografía, evento, estrés traumático) en los 30 primeros estudios del Banco. Empleamos Chi cuadrado o ANOVA para evaluar los niveles de estudio y de participante potencialmente asociados con la permanencia.Resultados: Estos 30 estudios prospectivos (N por estudio = 50 a 568; total N = 5499) realizados por 15 grupos de investigación en 5 países reclutaron niños expuestos a lesión (46%), desastre (24), violencia (13%), accidentes de tránsito (10%) u otros eventos agudos. Los participantes estaban en edad escolar o en la adolescencia (97%), 60% eran varones y, aproximadamente la mitad pertenecían a una minoría étnica. Empleando la armonización de datos para 22 mediciones, el 24% reportó estrés traumático significativo mayor o igual a un mes luego del evento. Otros desenlaces comúnmente evaluados incluyeron a la depresión (19 estudios), síntomas internalizantes y externalizantes (19), y salud mental de los padres (19). Los estudios incluyeron entre 2 y 5 evaluaciones de investigación; 80% de los participantes fueron mantenidos para dos o más evaluaciones. En el nivel de estudio, una mayor permanencia se asoció a un mayor número de evaluaciones planificadas. En el nivel de participantes, los adolescentes, los jóvenes pertenecientes a minorías, y aquellos en niveles socioeconómicos más bajos presentaron menores tasas de permanencia.Conclusión: Este proyecto demuestra la viabilidad y el valour de integrar la información sobre la investigación en estrés traumático y hacerla disponible para ser reutilizada. Como recurso de investigación en curso, el Banco puede promover el uso de prácticas de información 'FAIR' y facilitar el análisis integrado para generar progreso en la comprensión del estrés traumático infantil.

Posttraumatic Stress in Children After Injury: The Role of Acute Pain and Opioid Medication Use.

OBJECTIVES: After injury, many children experience posttraumatic stress symptoms (PTSS) that negatively impact recovery. Acute pain and PTSS share neurobiological pathways, and acute dosage of morphine has been linked to reduced PTSS in naturalistic studies. However, the complex interactions between pain, morphine and other opioid use, and PTSS have yet to be investigated in robust pediatric samples.This prospective, longitudinal study examined relationships between acute pain, opioid medications, and PTSS after pediatric injury. METHODS: Ninety-six children aged 8 to 13 years (mean = 10.60, SD = 1.71), hospitalized for unintentional injury, completed assessments at baseline (T1) and 12 weeks (T2) later. Pain ratings and opioid administration data were obtained via chart review. RESULTS: Structural equation modeling revealed that worst pain endorsed during hospitalization was positively associated with concurrent and later PTSS when controlling for evidence-based risk factors (ie, age, sex, prior trauma history, traumatic appraisals of injury event, heart rate). Neither opioid medications overall nor morphine specifically (milligram/kilogram/day) administered during hospitalization mediated the relationship between pain and T2 PTSS. CONCLUSIONS: Pain during hospitalization may increase susceptibility for persistent PTSS above and beyond the influence of other empirical risk factors. Findings suggest that pain assessment may be a useful addition to pediatric PTSS screening tools and highlight the need for additional research on pharmacological secondary prevention approaches. Given that inadequate pain control and persistent PTSS each hinder recovery and long-term functioning, better understanding of interactions between acute pain and PTSS after injury is essential for improving screening, prevention, and early intervention efforts.

Evaluating the Acceptability and Validity of Assessing Pain and Posttraumatic Stress Symptoms in an Adaptable eHealth System for School-Age Children.

OBJECTIVE: To provide initial evaluation of the acceptability of a new eHealth system incorporating personalized self-report assessment of multiple health domains in school age children, and assess convergent validity of two brief measures presented via this system. METHODS: Ill or injured children (N=167) age 6 to 14 recruited in two pediatric health care systems used the prototype eScreen interface on a mobile device to select an avatar and complete brief assessments of pain and posttraumatic stress symptoms (PTSS). Children rated technology acceptability and completed validated measures for pain and PTSS. RESULTS: Children's ratings indicated they found the eScreen interface easy to use (mean rating 4.4 on a 1-5 scale), potentially useful in helping them recover (mean=3.7), and would use / recommend it (mean=4.0). Among children age 6 to 8, mean ratings were: easy to use (3.7), usefulness (3.3), would use/recommend (3.4). Acceptability was largely consistent across child gender, family income, or usual access to mobile devices. eScreen measures showed strong convergent validity with established measures. The eScreen Pain Screener was highly correlated (r =.86 - .92) with, and evidenced strong agreement with, two validated pain measures. eScreen PTSS scores were strongly correlated with a validated PTSS measure (r=.67); a positive PTSS screen was associated with significantly higher PTSS severity. CONCLUSIONS: Study results support the acceptability (ease of use, intention to use/recommend, perceived usefulness) of these tools for older school age children, and provide strong initial evidence for the validity of two brief measures presented in a novel digital modality.

A Prospective Examination of Child Avoidance Coping and Parental Coping Assistance After Pediatric Injury: A Mixed-Methods Approach.

OBJECTIVE: Millions of children experience injuries annually, and avoidance coping increases risk of negative emotional and physical outcomes after injury. Little is known about how children select avoidance coping strategies. Parents may help their children cope with an injury by encouraging or discouraging the use of specific strategies, such as avoidance coping. The present study examined parental influence of child use of avoidance coping post-injury. METHODS: Children ages 8-13 (65% male; 50% White) hospitalized for pediatric injury and their parents (N = 96 child-parent dyads) participated in an interview and discussion task about coping at baseline, and then completed coping/coping assistance measures at three time points: T1 (within 2 weeks post-injury), T2 (6-weeks post-injury), and T3 (12-weeks post-injury). RESULTS: When presented with an ambiguous situation in the observational interview and discussion task, the number of avoidance coping solutions offered by children independently as well as during a discussion with their parent predicted the child's ultimate avoidance versus non-avoidance coping choice. The number of avoidance coping solutions offered by parents did not predict children's final choice to use avoidance coping. Longitudinal data suggest that parent encouragement of avoidance coping predicted child avoidance coping within the first 6-weeks post-trauma. CONCLUSIONS: Our study suggests that child avoidance coping is multifaceted and may result from both parent encouragement as well as independent decisions by children. Future research may explore additional factors that influence child avoidance coping, outside of parental suggestion, in response to trauma exposure.

Opportunities for nurses to support recovery after pediatric injury: Relationships among posttraumatic stress, hope, and quality of life.

PURPOSE: Nurses are at the forefront of children's postinjury recovery; this unique role provides an opportunity for nurses to recognize and screen for symptoms that may interfere with children's quality of life (QOL). As such, aims of the present investigation were to explore selected variables (e.g., posttraumatic stress symptoms [PTSS], hope) that have the potential to impact QOL after pediatric injury, with a larger goal of contributing to recommendations for nursing practice to support children's full (physical and emotional) recovery during the peritrauma period following injury. DESIGN AND METHODS: Sixty children (aged 7-13) completed measures of PTSS, hope, and QOL while receiving injury treatment. RESULTS: PTSS significantly predicted concurrent QOL, ß = -0.42, p = 0.001. Exploratory results demonstrated that specific PTSS clusters (re-experiencing [ ß = -0.39; p = 0.003), avoidance [ ß = -0.35; p = 0.009], arousal [ ß = -0.34; p = .012]) all significantly predicted QOL. Specific PTSS were explored. Hope (overall, domains of pathways, general agency, goal setting) did not significantly predict concurrent QOL. PRACTICE IMPLICATIONS: While this study is exploratory and more research is needed, current results suggest that nurses' awareness of PTSS (including symptoms of re-experiencing, avoidance, arousal) may help medical teams in identifying children that are at risk for impaired functional recovery (e.g., QOL) during the peritrauma period. Nurses may want to consider advocating for the integration of PTSS screeners into standard medical care. In addition, nurses have the opportunity to serve as key medical professionals in the delivery of trauma-informed medical care (which aims to minimize further trauma or re-traumatization). Nursing leadership may want to consider offering training in how nurses can identify and respond to children who have experienced an injury (such as trauma-informed care).

Introduction to the special issue: Trauma-informed care for children and families.

This special issue of Psychological Services includes 18 articles describing efforts to promote and provide trauma-informed care for children and families. Trauma-informed care is an approach to providing services that is sensitive to the possibility that children and families have experienced past or ongoing traumatic situations with implications for their current functioning and response to interventions. Installing and maintaining a trauma-informed approach in organized care settings requires effective planning, initial assessment, implementation, reassessment, and support that reflects an ongoing commitment to recognizing the impact of trauma on those being served. The articles contained in this special issue span a range of efforts in each of these areas, including the development and refinement of models of care and specific interventions, establishing quality assessment tools, and providing illustrations of lessons learned from attempts to implement and sustain trauma-informed initiatives. This introduction to the special issue provides a brief overview of these articles. The purpose of this special issue is to share current data and models of trauma-informed care and to encourage further development of collaborative models, interventions, measurement tools, and implementation efforts that lead to better services and outcomes for children and families who experience trauma. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

A parent-led intervention to promote recovery following pediatric injury: study protocol for a randomized controlled trial.

BACKGROUND: Injury is one of the most prevalent potentially emotionally traumatic events that children experience and can lead to persistent impaired physical and emotional health. There is a need for interventions that promote full physical and emotional recovery and that can be easily accessed by all injured children. Based on research evidence regarding post-injury recovery, we created the Cellie Coping Kit for Children with Injury intervention to target key mechanisms of action and refined the intervention based on feedback from children, families, and experts in the field. The Cellie Coping Kit intervention is parent-guided and includes a toy (for engagement), coping cards for children, and a book for parents with evidence-based strategies to promote injury recovery. This pilot research trial aims to provide an initial evaluation of the impact of the Cellie Coping Kit for Children with Injury on proximal targets (coping, appraisals) and later child health outcomes (physical recovery, emotional health, health-related quality of life). METHOD / DESIGN: Eighty children (aged 8-12 years) and their parents will complete a baseline assessment (T1) and then will be randomly assigned to an immediate intervention group or waitlist group. The Cellie Coping Kit for Injury Intervention will be introduced to the immediate intervention group after the T1 assessment and to the waitlist group following the T3 assessment. Follow-up assessments of physical and emotional health will be completed at 6 weeks (T2), 12 weeks (T3), and 18 weeks (T4). DISCUSSION: This will be one of the first randomized controlled trials to examine an intervention tool intended to promote full recovery after pediatric injury and be primarily implemented by children and parents. Results will provide data on the feasibility of the implementation of the Cellie Coping Intervention for Injury as well as estimations of efficacy. Potential strengths and limitations of this design are discussed. TRIAL REGISTRATION: Clinicaltrials.gov, NCT03153696 . Registered on 15 May 2017.

Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients.

BACKGROUND: Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. OBJECTIVE: This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. DESIGN: Systematic review. RESULTS: Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. CONCLUSIONS: Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.