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.

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.

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.

Dysfunctional posttraumatic cognitions, posttraumatic stress and depression in children and adolescents exposed to trauma: a network analysis.

BACKGROUND: The latest version of the International Classification of Diseases (ICD-11) proposes a posttraumatic stress disorder (PTSD) diagnosis reduced to its core symptoms within the symptom clusters re-experiencing, avoidance and hyperarousal. Since children and adolescents often show a variety of internalizing and externalizing symptoms in the aftermath of traumatic events, the question arises whether such a conceptualization of the PTSD diagnosis is supported in children and adolescents. Furthermore, although dysfunctional posttraumatic cognitions (PTCs) appear to play an important role in the development and persistence of PTSD in children and adolescents, their function within diagnostic frameworks requires clarification. METHODS: We compiled a large international data set of 2,313 children and adolescents aged 6 to 18 years exposed to trauma and calculated a network model including dysfunctional PTCs, PTSD core symptoms and depression symptoms. Central items and relations between constructs were investigated. RESULTS: The PTSD re-experiencing symptoms strong or overwhelming emotions and strong physical sensations and the depression symptom difficulty concentrating emerged as most central. Items from the same construct were more strongly connected with each other than with items from the other constructs. Dysfunctional PTCs were not more strongly connected to core PTSD symptoms than to depression symptoms. CONCLUSIONS: Our findings provide support that a PTSD diagnosis reduced to its core symptoms could help to disentangle PTSD, depression and dysfunctional PTCs. Using longitudinal data and complementing between-subject with within-subject analyses might provide further insight into the relationship between dysfunctional PTCs, PTSD and depression.

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.

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.

Acute Pain and Posttraumatic Stress After Pediatric Injury.

OBJECTIVE: Using a prospective, longitudinal design, we examined the relationship between acute pain and posttraumatic stress symptoms (PTSS) in youth following injury. METHODS: Children aged 8-17 years who sustained an injury (N = 243) and their parents participated in baseline interviews to assess children's worst pain since injury. 6 months later, participants completed follow-up interviews to assess child PTSS. RESULTS: Pain as assessed by the Color Analogue Pain Scale (CAS) predicted PTSS 6 months after injury, even when controlling for demographic and empirically based risk factors. On the other hand, pain as assessed by the Faces Pain Rating Scale was not a significant independent predictor of PTSS. CONCLUSIONS: The CAS may be a useful addition to existing screening tools for PTSS among children. Additional research is warranted to understand underlying mechanisms linking acute pain and PTSS to improve assessment, prevention, and treatment approaches and promote optimal recovery after pediatric injury.

Pilot Randomized Controlled Trial of a Novel Web-Based Intervention to Prevent Posttraumatic Stress in Children Following Medical Events.

OBJECTIVE: To assess feasibility and estimate effect size of a self-directed online intervention designed to prevent persistent posttraumatic stress after acute trauma. METHODS: Children aged 8-12 years with a recent acute medical event were randomized to the intervention (N = 36) or a 12-week wait list (N = 36). Posttraumatic stress, health-related quality of life, appraisals, and coping were assessed at baseline, 6, 12, and 18 weeks. RESULTS: Most children used the intervention; half completed it. Medium between-group effect sizes were observed for change in posttraumatic stress severity from baseline to 6 weeks (d = -.68) or 12 weeks (d = -.55). Exploratory analyses suggest greatest impact for at-risk children, and a small effect for intervention initiated after 12 weeks. Analysis of covariance did not indicate statistically significant group differences in 12-week outcomes. CONCLUSIONS: This pilot randomized controlled trial provides preliminary evidence that a self-directed online preventive intervention is feasible to deliver, and could have an effect in preventing persistent posttraumatic stress.

Brief Practical Screeners in English and Spanish for Acute Posttraumatic Stress Symptoms in Children.

With millions of children experiencing acute traumatic events, validated screening tools are needed in both research and service contexts. We aimed to identify and evaluate short forms of the Acute Stress Checklist for Children in English (ASC-Kids) and Spanish (Cuestionario de Estrés Agudo-Niños [CEA-N]), using data from 4 samples (Ns of 254, 225, 176, and 80) of children with recent acute trauma. Confirmatory factor analyses of the full checklist in the largest sample guided item selection for 6-item and 3-item short forms. Across samples, both short forms (ASC-6/ASC-3 in English; CEA-6/CEA-3 in Spanish) were correlated with acute stress disorder (ASD) symptom severity on the full checklist (r = .79 to .92), and on an interview measure (r = .52 to .62). Receiver operating curve analyses for each short form detecting current ASD status showed high areas under the curve (.76 to .95). Cutoff scores identified based on Sample 1 provided acceptable sensitivity (.59 to 1.00) and specificity (.57 to .86) across samples. Children scoring above the cutoff on each screener reported greater concurrent impairment from ASD symptoms and more severe posttraumatic stress 3 months later. These very brief measures could expand clinicians' and researchers' ability to screen for acute posttraumatic stress in children.

A Qualitative Analysis of Children's Emotional Reactions During Hospitalization Following Injury.

Children who sustain injuries are at risk for experiencing traumatic stress reactions. Few studies have obtained detailed, qualitative information regarding children's and parents' own understanding of their experiences during the peritrauma period. Understanding children's injury and early hospital experiences is crucial to inform the development of early interventions during the peritrauma period, which speak to these concerns. The primary purpose of this study was to understand child and parent views of the stressors experienced by children hospitalized for an injury. A secondary aim was to identify children's feelings and thoughts about injury- and hospital-related stressors. Ten children and their parents participated in semistructured interviews. Interviews were audio-recorded, transcribed, and coded. Stressors were classified into 5 domains: procedural concerns, uncertainty, sleep and nutrition challenges, being confined to the hospital, and home preparation. Children and parents were more likely to articulate feelings about stressors than thoughts about stressors. Feelings reported by children and parents were predominantly negative. Children and parents may have an easier time expressing feelings than thoughts, which has implications for communicating with medical teams as well as for psychological treatment. Future research should examine how children's perceptions of their injury- and hospital-related experiences relate to later outcomes such as traumatic stress reactions.

Coping and coping assistance among children with sickle cell disease and their parents.

The ways in which a family copes with the physical and psychosocial burdens of sickle cell disease (SCD) can influence the child and family functioning. However, few studies have examined SCD-related stressors beyond pain or how children and parents cope with these stressors. This study aimed to describe child coping and parent attempts to help their children cope (ie, coping assistance) with a range of SCD stressors by using a triangulated mixed methods design. We also explored convergence between findings from qualitative interviews and quantitative coping inventories. Fifteen children (aged 6 to 14 years) with SCD and their parents (N=15) completed semistructured interviews and self-report measures to assess SCD-related stressors, coping, and coping assistance strategies. Findings indicate that children experience numerous stressors related to SCD and its treatment, including, but not limited to, pain. To manage these stressors, families employ a range of approach and avoidance-oriented coping strategies. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping processes among children with SCD and their parents. Examining a broad range of stressors and integrating multiple assessment methods helps improve our understanding of coping with pediatric SCD, which may inform clinical practice and family-focused intervention development.

A new method for assessing content validity in model-based creation and iteration of eHealth interventions.

BACKGROUND: The advent of eHealth interventions to address psychological concerns and health behaviors has created new opportunities, including the ability to optimize the effectiveness of intervention activities and then deliver these activities consistently to a large number of individuals in need. Given that eHealth interventions grounded in a well-delineated theoretical model for change are more likely to be effective and that eHealth interventions can be costly to develop, assuring the match of final intervention content and activities to the underlying model is a key step. We propose to apply the concept of "content validity" as a crucial checkpoint to evaluate the extent to which proposed intervention activities in an eHealth intervention program are valid (eg, relevant and likely to be effective) for the specific mechanism of change that each is intended to target and the intended target population for the intervention. OBJECTIVE: The aims of this paper are to define content validity as it applies to model-based eHealth intervention development, to present a feasible method for assessing content validity in this context, and to describe the implementation of this new method during the development of a Web-based intervention for children. METHODS: We designed a practical 5-step method for assessing content validity in eHealth interventions that includes defining key intervention targets, delineating intervention activity-target pairings, identifying experts and using a survey tool to gather expert ratings of the relevance of each activity to its intended target, its likely effectiveness in achieving the intended target, and its appropriateness with a specific intended audience, and then using quantitative and qualitative results to identify intervention activities that may need modification. We applied this method during our development of the Coping Coach Web-based intervention for school-age children. RESULTS: In the evaluation of Coping Coach content validity, 15 experts from five countries rated each of 15 intervention activity-target pairings. Based on quantitative indices, content validity was excellent for relevance and good for likely effectiveness and age-appropriateness. Two intervention activities had item-level indicators that suggested the need for further review and potential revision by the development team. CONCLUSIONS: This project demonstrated that assessment of content validity can be straightforward and feasible to implement and that results of this assessment provide useful information for ongoing development and iterations of new eHealth interventions, complementing other sources of information (eg, user feedback, effectiveness evaluations). This approach can be utilized at one or more points during the development process to guide ongoing optimization of eHealth interventions.

Traumatic Stress, Depression, and Recovery: Child and Parent Responses After Emergency Medical Care for Unintentional Injury.

OBJECTIVE: To assess psychological symptoms in injured children (aged 8-17 years) and their parents after emergency department (ED) care to examine the relationship between posttraumatic stress and depression symptoms, co-occurrence of symptoms within families, and the relationship of these symptoms to parent-reported overall recovery. METHODS: Children and parents (n = 263 child-parent dyads) were enrolled during ED treatment for unintentional injury. Approximately 5 months later, children and parents (n = 178 dyads) completed standardized measures of posttraumatic stress and depression symptoms and parents reported on child overall recovery. RESULTS: Follow-up assessments found significant posttraumatic stress symptoms in 15% of children and 5% of parents, significant depression symptoms in 13% of children and 16% of parents, and problematic overall recovery in 17% of children. For both children and parents, posttraumatic stress and depression symptom severity were strongly associated. Child and parent symptoms were only modestly associated with each other, and there were few families in which both child and parent had significant posttraumatic stress or depression. Parent symptoms, but not child symptoms, were inversely associated with children's overall recovery. CONCLUSIONS: For about 1 in 6 children and parents, unintentional injury treated in the ED can be associated with negative psychological sequelae and suboptimal recovery. Within families, child and parent responses may differ; their relative association with overall recovery deserves additional research. To promote emotional recovery, ED clinicians should be aware of the potential psychological impact of unintentional injury, provide timely evidence-based anticipatory guidance, and communicate these concerns to primary care clinicians.

A mixed methods assessment of coping with pediatric cancer.

The purpose of this study was to describe child coping and parent coping assistance with cancer-related stressors during treatment. Fifteen children (age 6-12) with cancer and their parents (N = 17) completed semistructured interviews and self-report measures to assess coping and coping assistance. Results suggest families utilized a broad array of approach and avoidance strategies to manage cancer and its treatment. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping among children with cancer and their parents. Using a mixed methods approach to assess coping provides a richer understanding of families' experiences, which can better inform clinical practice.

Preventing posttraumatic stress following pediatric injury: a randomized controlled trial of a web-based psycho-educational intervention for parents.

OBJECTIVE: The study objective is to evaluate the feasibility and efficacy of a web-based intervention for parents (AfterTheInjury.org [ATI]) in promoting emotional recovery following pediatric injury. METHODS: 100 children with injuries requiring medical attention and their parents were randomly assigned to the intervention or usual care. Efficacy outcomes included parent knowledge and child and parent posttraumatic stress symptoms (PTSS). RESULTS: All parents in the intervention group completed the intervention (directed use of ATI) in the hospital. 56% reported using ATI online post-discharge, and 100% of these parents found it helpful. Parent knowledge increased immediately post-intervention, but there was no significant intervention impact on parent knowledge or PTSS at a 6-week follow-up. Relationships between knowledge and PTSS were identified. CONCLUSIONS: Brief web-based interventions introduced during child hospitalization are a feasible strategy to reach many parents following pediatric injury. Preventing psychological symptoms may require more than parental education alone.

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.