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Objective. Poor metabolic control and low treatment adherence remain major issues for many pediatric patients with type 1 diabetes. Important risk factors for both include psychosocial variables such as stress. To date, stress in type 1 diabetes patients and their parents has been investigated at an individual level. The present study tested the hypothesis that patients’, mothers’, and fathers’ perceived stress is positively related to each other and therefore is a factor common to the family. This factor was then hypothesized to be related to patients’ poorer treatment adherence behavior and metabolic control. Research Design and Methods. This cross-sectional study at the University Children’s Hospital Zurich included 190 type 1 diabetes patients (age: 7–18 years; illness duration: ≥1 year) and their families. The Perceived Stress Scale was used to measure the self-reported stress of patients, mothers, and fathers. Patients’ treatment adherence was rated by their endocrinologists. HbA1c served as indicator of metabolic control. A structural equation model (SEM) was conducted for analysis. Results. The SEM showed adequate model fit. Patients’ ( β = .567 , p ≤ .001 ), mother’s ( β = .621 , p ≤ .001 ), and father’s ( β = .585 , p ≤ .001 ) perceived stress loaded all on a single factor, perceived family stress. This factor was significantly associated with treatment adherence ( β = − .384 , p ≤ .001 ) and with HbA1c ( β = .210 , p = .012 ) of patients. Conclusions. Results confirmed perceived family stress to be a common family construct. Because perceived family stress might have a negative impact on patients’ treatment adherence and HbA1c, subjective stress appraisals of patients and both parents should be considered when counseling children and adolescents with type 1 diabetes.

The objective of this study is to understand the long-term mental sequelae for families over the course of the COVID-19 pandemic by longitudinally investigating the well-being of children with and without complex medical histories and their parents. Well-being of 200 children (between 7 and 18 years of age; 73 typically developing, 46 born very preterm, 73 with complex congenital heart disease) and 175 of their parents was assessed prior to and during the first (April–May 2020), second (October–November 2020), third (April–May 2021), and fourth wave (October–November 2021) of the pandemic with standardized questionnaires. Linear mixed models were used to investigate longitudinal changes in child and parent well-being compared to before the pandemic. Social and COVID-19-specific determinants were investigated as predictors of impaired well-being. To illustrate clinical relevance, the proportion of children and parents scoring > 1 SD below normative mean/median was reported. Compared to before the pandemic, child proxy-reported well-being was lower during the first but not the second, third, and fourth waves. Child self-reported well-being was not lower during the pandemic compared to before. Parent well-being dropped during the first wave and remained low throughout the subsequent waves. Proxy-reported child and self-reported parent well-being was lower in families with sparse social support and poor family functioning. Parents of typically developing children reported lower well-being than parents of children born very preterm or with a complex congenital heart disease. In November 2021, 20% of children (both self- and proxy-report) and 24% of parents scored below the normal range compared to 11% (child self-report), 10% (child proxy-report), and 16% (parent self-report), respectively, before the pandemic. The pandemic continues to impact the well-being of parents of school-aged children with and without complex medical histories more than 1 year after its outbreak. Children’s well-being was specifically affected during the first wave of the pandemic and has recovered thereafter. Families with sparse social support and poor family functioning are particularly at risk for compromised well-being and support should be provided to them.

Aims Having a child with congenital heart disease (CHD) can affect parental health-related quality of life (HR-QoL). We investigated the long-term trajectories of mental HRQoL (m-HRQoL) in mothers of children with CHD and examined risk factors for persistent low m-HRQoL. Methods One hundred twenty-five mothers of children with CHD completed a standardized questionnaire on m-HRQoL (mental subscale SF-12) after the children’s first open-heart surgery and subsequently when the children were 1, 4, 6, 10, and 13 years old. A z-score for m-HRQoL was calculated with national norms. Latent class growth analysis (LCGA) was used to identify subgroups of mothers with regards to their m-HRQoL trajectories over time. Regression analysis investigated predictors for chronically low m-HRQoL. Results Compared to norms, mothers of children with CHD had significantly lower m-HRQoL immediately after open-heart surgery (β = −0.30 (CI-95: −0.44, −0.15)). Subsequently, m-HRQoL increased to a normal level (m-HRQoL compared to the norm from 1 to 13 years: β ranges between 0.05 and 0.27). LCGA revealed two distinct groups of m-HRQoL trajectories: A group with normal m-HRQoL (75% of mothers, means z-scores range between − 0.76 and 0.62) and a group with chronically low m-HRQoL (25% of mothers, mean z-scores range between −1.32 and −0.10). Chronically, low m-HRQoL was associated with poorer social support (OR = 3.39 (CI-95: 1.40, 8.49), p = 0.008) but not with parental education, migration background, number of open-heart surgeries, diagnosis of a univentricular CHD, or low IQ. Conclusion A quarter of mothers of children with CHD have chronically low m-HRQoL throughout their child’s development, especially those mothers with poor social support. Further studies of family-oriented approaches are needed to identify and support these mothers and reinforce parental well-being.

This study assessed self-reported health-related quality of life and psychological adjustment in 43 adolescents and young adults (ages in years: 14–24, M = 17.6, SD = 2.2) with congenital melanocytic nevi (CMN) and examined associations with sociodemographic variables, characteristics of the CMN, perceived social reactions, and cognitive emotion regulation strategies. Outcome measures included the Pediatric Quality of Life Inventory™ 4.0 and the Strengths and Difficulties Questionnaire. Findings suggest impaired psychosocial health and psychological adjustment in youth with CMN compared to community norms. Impairments were associated with higher age of participants, lower socioeconomic status, visibility of the skin lesion, perceived stigmatization, poorer perceived social support, and maladaptive cognitive emotion regulation strategies (self-blame, rumination, and catastrophizing), but not with sex of participants, extent of the skin lesion, and surgical removal of the nevus. Implications for clinical practice and future research are discussed.

Background Acute intoxication-type inborn errors of metabolism (IT-IEM) such as urea cycle disorders and non-acute IT-IEM such as phenylketonuria (PKU) and their treatment have a major impact on the life of affected children and families. Yet patients’ and parents’ perspectives on the burdens of IT-IEM and its effects on everyday functioning and well-being have rarely been addressed. Patient- and observer-reported outcomes (PROs/ObsROs) are critically important to evaluate and target health care and treatment efficacy. Therefore, it is mandatory to define PROs/ObsROs relevant to patients with IT-IEM, their families, and health care professionals and to provide valid, standardised and reliable measuring instruments. To achieve consensus we performed a two-round, electronic-based modification of a Delphi survey including 27 parents of affected children, nine teenage patients and 35 health professionals (physicians, nutritionists, psychologists). The final set of PROs/ObsROs was discussed and defined in an online consensus meeting with a subsample of three health professionals, three parents and two patients. For this final set, appropriate measures (PROMs/ObsROMs) were assembled. Results Seventeen PROs/ObsROs constitute the final core set for paediatric IT-IEM. They cover social (e.g. social participation), emotional (e.g. positive affect), and disease-related aspects (e.g. attitude towards treatment) of patients’ lives as well as the experience of parents (e.g. parental stress). Conclusion To promote a holistic treatment approach, this consensus-driven set of relevant PROs/ObsROs should be incorporated into daily IT-IEM care and considered as the key psychological outcomes in clinical trials. We have identified existing—psychometrically and contextual—appropriate PROMs/ObsROMs with open access to facilitate this process.

Early or excessive sexualized behaviors and preoccupations with sexuality (SB) exhibited by juveniles who have sexually offended (JSO) are considered risk factors for sexual recidivism. However, research into SB among JSO is scarce. The present study retrospectively examined prevalence rates and patterns of SB among JSO prior to sexual offending and their relation to psychopathology and sexual recidivism. We systematically assessed information from psychiatric and psychological expert reports in case files of 230 JSO aged 12–18 years (M = 14.46, SD = 1.49) from a population sample of JSO with contact sexual offenses. A total of 93 (40.4%) JSO exhibited SB prior to the index sexual offense. Latent class analysis revealed three SB profiles: (1) “low/no SB” (n = 188), (2) “preoccupied SB” (preoccupation with sexuality, e.g., early pornography consumption, excessive masturbation; n = 29), and (3) “dysregulated SB” (exhibiting inappropriate sexualized behaviors toward others, e.g., sexualized speech, touching others inappropriately; n = 13). The preoccupied SB and the dysregulated SB groups showed higher prevalence of psychiatric disorders than the low/no SB. However, none of the JSO of the preoccupied SB or dysregulated SB groups reoffended sexually within 365 days after conviction for the sexual index offense (low/no SB: 12.8%). Overall, our findings do not support a general notion of the presence of SB as an indicator of high risk for persistent sexual offending among JSO. Instead, JSO with SB appear particularly burdened regarding a range of psychiatric disorders that should be treated accordingly.

Background: Pre-hospital providers, such as paramedics and emergency medical technicians, are in a position to provide key emotional support to injured children and their families. Objective: Our goal was to examine (a) pre-hospital providers’ knowledge of traumatic stress in children, attitudes towards psychosocial aspects of care, and confidence in providing psychosocial care, (b) variations in knowledge, attitudes, and confidence according to demographic and professional characteristics, and (c) training preferences of pre-hospital providers regarding psychosocial care to support paediatric patients and their families. Method: We conducted a cross-sectional, online survey among an international sample of 812 pre-hospital providers from high-income countries. The questionnaire was adapted from a measure for a similar study among Emergency Department staff, and involved 62 items in 7 main categories (e.g. personal and work characteristics, knowledge of paediatric traumatic stress, and confidence regarding 18 elements of psychosocial care). The main analyses comprised descriptive statistics and multiple regression analyses. Results: On average, respondents answered 2.7 (SD = 1.59) out of seven knowledge questions correctly. Respondents with higher knowledge scores were more often female, parent of a child under 17, and reported that at least 10% of their patients were children. A majority of participants (83.5%) saw all 18 aspects of psychosocial care as part of their job. Providers felt moderately confident (M = 3.2, SD = 0.45) regarding their skills in psychosocial care, which was predicted by gender (female), having more experience, having a larger proportion of child patients, and having received training in psychosocial care in the past five years. Most respondents (89.7%) wanted to gain more knowledge and skills regarding psychosocial care for injured children. In terms of training format, they preferred an interactive website or a one-off group training. Conclusions: There appears to be both a need and an opportunity for education initiatives regarding paediatric traumatic stress in the pre-hospital context.

Additional file 2. Stakeholder ratings of all PRO across the two Delphi surveys.

Additional file 3. Core selection of PROMs to measure the final PRO core set.

Background Living with a non-acute (phenylketonuria) or acute (e.g. urea cycle disorders, organic acidurias) intoxication-type inborn error of metabolism (IT-IEM) can have a substantial impact on health-related quality of life (HrQoL) of paediatric patients and their families. Parents take primary responsibility for treatment monitoring and experience worry and fear about their child's health status. Quantitative evidence on parental psychological factors which may influence the HrQoL of patients with IT-IEM are sparse to non-existent. Methods In this multicenter survey study 50 parents of IT-IEM patients (ages 5-19) assessed the severity of their child's disease, reported on caregiver burden, and proxy-rated their child's HrQoL. Additionally, 35 patient self-reports on HrQoL were obtained (n = 16 female patients, n = 19 male patients). Multiple linear regressions were conducted to examine the predictive power of child age, sex, medical diagnosis type (acute / non-acute), parental perceived disease severity and caregiver burden on patients' HrQoL. Mediation analyses were used to investigate the relation of caregiver burden and parental ratings of disease severity with patients' HrQoL. Results Significant regression models for self-reported [F(5,34) = 10.752, p

Additional file 4. Additional PROMs to measure the PROs included in the core set (predefined requirements not fulfilled).

Additional file 1. List of criteria for inclusion of PROMs to measure the PRO core set.

INTRODUCTION: Trauma-focused cognitive behavioural therapies are the first-line treatment for posttraumatic stress disorder (PTSD) in children and adolescents. Nevertheless, open questions remain with respect to efficacy: why does this first-line treatment not work for everyone? For whom does it work best? Individual clinical trials often do not provide sufficient statistical power to examine and substantiate moderating factors. To overcome the issue of limited power, an individual participant data meta-analysis of randomised trials evaluating forms of trauma-focused cognitive behavioural therapy in children and adolescents aged 6-18 years will be conducted. METHODS AND ANALYSIS: We will update the National Institute for Health and Care Excellence guideline literature search from 2018 with an electronic search in the databases PsycINFO, MEDLINE, Embase, Cochrane Central Register of Controlled Trials and CINAHL with the terms (trauma* OR stress*) AND (cognitive therap* OR psychotherap*) AND (trial* OR review*). Electronic searches will be supplemented by a comprehensive grey literature search in archives and trial registries. Only randomised trials that used any manualised psychological treatment-that is a trauma-focused cognitive behavioural therapy for children and adolescents-will be included. The primary outcome variable will be child-reported posttraumatic stress symptoms (PTSS) post-treatment. Proxy-reports (teacher, parent and caregiver) will be analysed separately. Secondary outcomes will include follow-up assessments of PTSS, PTSD diagnosis and symptoms of comorbid disorders such as depression, anxiety-related and externalising problems. Random-effects models applying restricted maximum likelihood estimation will be used for all analyses. We will use the Revised Cochrane Risk of Bias tool to measure risk of bias. ETHICS AND DISSEMINATION: Contributing study authors need to have permission to share anonymised data. Contributing studies will be required to remove patient identifiers before providing their data. Results will be published in a peer-reviewed journal and presented at international conferences. PROSPERO REGISTRATION NUMBER: CRD42019151954.

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.

Supplemental material, SA_revision_II_supplemental_tables for Validity of Risk Assessment Instruments Among Juveniles Who Sexually Offended: Victim Age Matters by Chiara Krause, Alexander Roth, Markus A. Landolt, Cornelia Bessler and Marcel Aebi in Sexual Abuse: A Journal of Research and Treatment

Background: Trauma adjustment varies in children and adolescents. Studies on objective risk factors of posttraumatic stress symptoms (PTSS) yielded inconsistent results. Dysfunctional posttraumatic cognitions (PTCs) might play a mediating role between risk factors and posttraumatic symptomatology. Objective: To investigate the interplay of the characteristics of the trauma (e.g. trauma type), the characteristics of the individual (e.g. age, sex), and the characteristics of the social environment (e.g. parental distress, marital status) on PTSS and depression, taking the child’s dysfunctional PTCs into account as a possible mediator. Method: Structural equation modelling was used to better understand trauma adjustment in two heterogeneous samples of children and adolescents: a sample of 114 participants aged 7–16 after accidental trauma and a sample of 113 participants aged 6–17 after interpersonal trauma. Results: In the accidental trauma sample, dysfunctional PTCs mediated the positive associations of younger age and lower parental educational level on child PTSS, but not on depression. In the interpersonal trauma sample, being female positively predicted child depression. Furthermore, parental dysfunctional PTCs positively predicted both child PTSS and depression. No mediation effect of child dysfunctional PTCs was found in the interpersonal trauma sample. Child dysfunctional PTCs moderately to strongly predicted child PTSS and depression in both trauma samples. Conclusions: The impact of the characteristics of the individual and the characteristics of the social environment on child PTSS and depression might depend on the type of trauma experienced. Dysfunctional PTCs mediated between the characteristics of the individual and the characteristics of the social environment and the severity of PTSS in the aftermath of accidental trauma, but not of interpersonal trauma. • Dysfunctional posttraumatic cognitions (PTCs) were associated with posttraumatic stress symptoms (PTSS) and depression.• In accidentally injured children, dysfunctional PTCs mediated between the characteristics of the individual and the characteristics of the social environment and the severity of PTSS.

Purpose: To examine parent-child agreement regarding a child's health-related quality of life (HRQOL) among three health status groups. Methods: Parent-child agreement was evaluated for three health status groups of a population-based sample: (1) children with mental health problems (N=461), (2) children with physical health problems (N=281), and (3) healthy controls (N=699). The KIDSCREEN-27 was used to assess HRQOL. The children were 9-14years of age. Results: Intraclass correlation coefficients were mostly good across all HRQOL scores and health status groups. This relatively high level of agreement was also reflected by the following findings: first, the AGREE group was the largest in three out of five HRQOL subscales in all health status groups; second, when disagreement occurred, it was often minor in magnitude. Despite this relatively high level of agreement, the means of self-ratings were significantly higher for all HRQOL scores and health status groups than the means of proxy ratings. These higher self-ratings were especially pronounced among children with mental health problems in certain HRQOL domains. Conclusions: Even though the level of parent-child agreement regarding a child's HRQOL is relatively high, it should be considered that children (especially those with mental health problems) often report better HRQOL than their parents. It is, therefore, highly recommended that both proxy- and self-ratings are used to evaluate a child's HRQOL comprehensively

Eine bedeutsame Zahl von Kindern entwickelt nach Unfallen psychische Symptome, welche als post-traumatische Belastungsreaktionen bezeichnet werden konnen. Es wird ein Uberblick uber die Literatur zum Thema der psychischen Konsequenzen nach Unfallen im Kindesalter gegeben. Neben Klassifikation und Erfassung posttraumatischer psychischer Reaktionen, werden die Pravalenz, die Pathogenese, die Biologie sowie die Pravention und Behandlung solcher Storungen behandelt. Es wird empfohlen, dass zukunftig in der Behandlung des verunfallten Kindes vermehrt psycho-traumatologische Aspekte berucksichtigt werden. A significant number of child victims of accidents develops psychological symptoms which can be described as posttraumatic stress reactions. This article reviews the literature on psychological consequences of accidents. Classification, diagnosis, prevalence, pathogenesis, biology, prevention, and therapy of post-traumatic stress reactions in children and adolescents are discussed. Consideration of psychotraumatological aspects in the treatment of children and adolescents after accidents is recommended.

SPIRIT 2013 checklist: recommended items to address in a clinical trial protocol and related documents. (DOC 256Â kb)

SPIRIT 2013 checklist: recommended items to address in a clinical trial protocol and related documents. (DOC 256Â kb)

PURPOSE: To review data on health-related quality of life (HRQoL) in individuals with childhood trauma, including psychological maltreatment, physical maltreatment, sexual abuse, and neglect. METHODS: The literature search was conducted with pre-defined keywords using the following electronic bibliographic databases: EMBASE, PubMed, MEDLINE, CINAHL, PsyINFO, PSYNDEX, and Cochrane Database of Systematic Reviews. Further databases were searched for relevant dissertations. Study selection and data extraction were completed by two independent reviewers. RESULTS: The literature search yielded 1568 entries. Nineteen articles met all inclusion criteria and were retained for further analysis. FINDINGS quite consistently showed significant negative associations between child maltreatment and both self- and proxy-rated HRQoL. Effect sizes range from small to large. Number of types of maltreatment and HRQoL were found to be negatively related. CONCLUSION: Data on HRQoL for maltreated children are still rare. Studies often investigate adult survivors of child maltreatment. Considering HRQoL in children and adolescents who suffered maltreatment would allow the planning of effective interventions and the evaluation of treatments to improve HRQoL of these children. Language: en

OBJECTIVES: To evaluate the effectiveness and most powerful selection of predictors of an early screening tool for posttraumatic stress disorder (PTSD) in a sample of 87 children ages 2 to 6 years after unintentional injury. METHODS: The examined screener was administered within 6 to 13 days post accident and consisted of an adapted version of the Pediatric Emotional Distress Scale (PEDS), the PEDS-ES (PEDS Early Screener), and questions on 5 additional risk factors (preexisting child behavioral problems, parental preexisting chronic mental or physical illness, pretraumatic life events in the family, parental feelings of guilt, parental posttraumatic stress). The PTSD Semi-structured Interview and Observational Record for Infants and Young Children served as criterion measure 6 months after the accident. A case was deemed positive when meeting criteria for full or partial PTSD. RESULTS: Use of the PEDS-ES without the additional risk factors performed best, with good sensitivity (85%) and moderate specificity (63%) for full or partial PTSD. CONCLUSIONS: The PEDS-ES allows for successful early screening of preschool-aged children after single accidental trauma. It may be used within a stepped-care model for early identification of individuals designated for possible secondary preventative interventions.

Background : Although previous research has consistently found considerable rates of acute stress disorder (ASD) in children with accidental injuries, knowledge about determinants of ASD remains incomplete. Guilt is a common reaction among children after a traumatic event and has been shown to contribute to posttraumatic stress disorder. However, its relationship to ASD has never been examined. Objective : This study assessed the prevalence of ASD in children and adolescents following road traffic accidents (RTAs). Moreover, the association between peritraumatic guilt and ASD was investigated relying on current cognitive theories of posttraumatic stress and controlling for female sex, age, socioeconomic status (SES), injury severity, inpatient treatment, pretrauma psychopathology, and maternal posttraumatic stress symptoms (PTSS). Methods : One hundred and one children and adolescents (aged 7–16 years) were assessed by means of a clinical interview approximately 10 days after an RTA. Mothers were assessed by questionnaires. Results : Three participants (3.0%) met diagnostic criteria for full ASD according to DSM-IV, and 17 (16.8%) for subsyndromal ASD. In a multivariate regression model, guilt was found to be a significant predictor of ASD severity. Female sex, outpatient treatment, and maternal PTSS also predicted ASD severity. Child age, SES, injury severity, and pretraumatic child psychopathology were not related to ASD severity. Conclusions : Future research should examine the association between peritraumatic guilt and acute stress symptoms in more detail. Moreover, guilt appraisals in the acute phase after an accident might be a relevant target for clinical attention. Keywords: Trauma; cognitive appraisals; childhood; injury (Published: 28 October 2015) Responsible Editor: Julian D. Ford, University of Connecticut Health Center, USA. For the abstract or full text in other languages, please see Supplementary files in the column to the right (under ‘Article Tools’) Citation: European Journal of Psychotraumatology 2015, 6 : 29074 - http://dx.doi.org/10.3402/ejpt.v6.29074

Findings about the influence of coping on psychological adjustment in children with different medical conditions are inconsistent and often based on cross-sectional data. This prospective study evaluated the effect of various coping strategies on children's post-traumatic stress symptoms and behavioral problems 1 month and 1 year after an accidental injury or the diagnosis of a chronic disease in 161 pediatric patients 6-15 years of age. Only minor positive effects of coping on psychosocial adjustment were found: Religious coping reduced post-traumatic stress symptoms. Active coping strategies had negative effects on internalizing and externalizing behavioral problems. Support seeking strategies, distraction, and avoidance had no impact on long-term psychosocial adjustment.

Background Siblings of pediatric cancer patients have a higher risk of developing emotional, behavioral, and social problems. However, little is known about specific experiences of this population in the first time after diagnosis. Objective The purpose of this qualitative study was to describe the experiences of siblings of pediatric cancer patients in different areas of life in the first half-year after the cancer diagnosis. Methods Semistructured interviews were conducted with 7 siblings of pediatric cancer patients (ages 11-18 years). Siblings were asked about their experiences in the hospital, in school, in their family, with peers, and with the ill child. Content analysis was used to derive important themes from the interviews. Results Twenty-three categories of siblings' experiences were identified from the data. Conclusions In all areas of life, siblings reported difficulties, such as absence of parents, dealing with the ill child's or other patients' suffering and appearance, or impaired school achievement. But the siblings also mentioned important resources such as peer relationship, helpful coping strategies, and increased family cohesion. Implications for practice The results of the present study lead to a list of important topics in different areas of life that might be helpful for healthcare professionals to have in mind when meeting with siblings of cancer patients. Integration of these findings should serve to improve sibling support and develop standardized sibling interventions.

Objective: To determine psychological adjustment of children after head burns. Methods: One hundred four children and adolescents between the ages of 5 and 17 years were assessed with the Child Behavior Checklist 1 to 13 years after burn. Mean total body surface area burned was 18%. According to burn localization, patients were classified into two groups: patients with head burns versus patients with burns of other areas. Results: Psychological adjustment as measured by the broad- and narrow-band scales of the Child Behavior Checklist was normal in both samples of burned patients. Conclusion: This study failed to find any specific psychological problems in survivors of pediatric head burns.