Data sharing and re-use in the traumatic stress field: An international survey of trauma researchers

Background: The FAIR data principles aim to make scientific data more Findable, Accessible, Interoperable, and Reusable. In the field of traumatic stress research, FAIR data practices can help accelerate scientific advances to improve clinical practice and can reduce participant burden. Previous studies have identified factors that influence data sharing and re-use among scientists, such as normative pressure, perceived career benefit, scholarly altruism, and availability of data repositories. No prior study has examined researcher views and practices regarding data sharing and re-use in the traumatic stress field. Objective: To investigate the perspectives and practices of traumatic stress researchers around the world concerning data sharing, re-use, and the implementation of FAIR data principles in order to inform development of a FAIR Data Toolkit for traumatic stress researchers. Method: A total of 222 researchers from 28 countries participated in an online survey available in seven languages, assessing their views on data sharing and re-use, current practices, and potential facilitators and barriers to adopting FAIR data principles. Results: The majority of participants held a positive outlook towards data sharing and re-use, endorsing strong scholarly altruism, ethical considerations supporting data sharing, and perceiving data re-use as advantageous for improving research quality and advancing the field. Results were largely consistent with prior surveys of scientists across a wide range of disciplines. A significant proportion of respondents reported instances of data sharing and re-use, but gold standard practices such as formally depositing data in established repositories were reported as infrequent. The study identifies potential barriers such as time constraints, funding, and familiarity with FAIR principles. Conclusions: These results carry crucial implications for promoting change and devising a FAIR Data Toolkit tailored for traumatic stress researchers, emphasizing aspects such as study planning, data preservation, metadata standardization, endorsing data re-use, and establishing metrics to assess scientific and societal impact

Child and Parent Perceptions of Participating in Multimethod Research in the Acute Aftermath of Pediatric Injury

Background: Despite growing evidence that participation in psychological trauma research is well tolerated by children and parents, ethics boards may voice concerns regarding research with families with recent acute trauma exposure. Factors impacting child and parent experiences of research participation are not well documented, particularly for methodologies including observational components. Objectives: This study describes child and parent perceptions of research participation involving an observational task following an acute traumatic event and explores potential relationships between research experience and selected demographic factors (race/ethnicity, sex, age, prior trauma exposure), and post-traumatic stress symptoms. Methods: As part of a larger study on the role of biopsychosocial factors in post-traumatic stress symptoms, 96 child–parent dyads (ages 8–12 years, M = 10.6) participated in a three–time point study following hospitalization for pediatric injury. At baseline, children and parents completed measures of reactions to research participation, post-traumatic stress symptoms, and trauma history. Measures of post-traumatic stress symptoms were repeated at 6- and 12-week follow-up assessments. Results: The majority of families reported they were glad they participated in the research study (61% children; 72% parents) and felt good about helping others (74% children; 93% parents). Negative feelings were uncommon (\u3c 10% of families). Perceptions of participation were not related to race, sex, or trauma history, but child age significantly factored into trust of the research team and informed consent (Spearman’s ρ = .289, p \u3c .01). Reactions to research were not significantly related to child or parent post-traumatic stress symptoms at any time point. Conclusions: Current results extend past research to suggest that most children’s and parents’ research experience is positive, even when completing an observational task during hospitalization for an injury. Children under the age of 10 years may perceive their participation as less voluntary, supporting prior findings that additional steps be taken to ensure their understanding of their choice in participation

La estructura factorial del Inventario de Crecimiento Postraumático en padres de niños críticamente enfermos

Background: Posttraumatic growth (PTG) was conceptualized as consisting of changes in three broad dimensions; Self, interpersonal relationships, and philosophy of life. The aim of this study is to analyze the factor structure of the Posttraumatic Growth Inventory (PTGI) in a sample of parents whose children had survived a critical hospitalization in order to consider the structural validity of the PTGI scores for this population and to report our understanding of PTG as a construct. Methods: 143 parents completed the PTGI 6 months after their child’s discharge from pediatric intensive care. The PTGI scores’ factor structure was studied through confi rmatory factor analyses (CFA) of different models supported in prior research, followed by an exploratory principal component analysis (PCA). Results: Prior models tested through CFA did not provide an acceptable fi t for our data. Through exploratory PCA, three components emerged that explained 73.41% of the variance; personal growth, interpersonal growth and transpersonal growth. Subsequent CFAs on this three-factor model showed that a bifactor model had the best fi t. Conclusion: Although the PTGI scores have shown slightly different factor structures among diverse populations, the three dimensions initially theorized appear to be robust, which supports the structural validity of its scoresAntecedentes: el crecimiento postraumático (CPT) se defi nió originalmente como la ocurrencia de cambios en tres dimensiones: personal, relaciones interpersonales y filosofía de vida. El objetivo de este estudio es analizar la estructura factorial de las puntuaciones del Inventario de Crecimiento Postraumático (PTGI) en una muestra de padres cuyos hijos sobrevivieron a una hospitalización en cuidados intensivos pediátricos para explorar la validez estructural en esta población e incrementar nuestra comprensión de este fenómeno. Método: 143 padres completaron el PTGI 6 meses después del alta de su hijo de cuidados intensivos. La estructura factorial de las puntuaciones en el PTGI se estudió mediante análisis factoriales confi rmatorios (AFC) de los diferentes modelos que habían emergido en estudios previos, seguido de un análisis exploratorio de componentes principales (ACP). Resultados: los modelos previos no proporcionaron un ajuste aceptable a nuestros datos. Mediante ACP emergieron tres componentes que explicaron el 73,41% de la varianza; crecimiento personal, crecimiento interpersonal y crecimiento transpersonal. Posteriores AFCs de este último modelo mostraron que un modelo bifactor obtuvo el mejor ajuste. Conclusión: aunque las puntuaciones del PTGI haya mostrado estructuras factoriales distintas en diferentes poblaciones, las tres dimensiones originalmente teorizadas son consistentes, lo que apoya su validez estructura

Seriously Injured Urban Black Men’s Perceptions of Clinical Research Participation

Purpose: Black men are uniquely vulnerable in American society and our health care system: they bear a disproportionate burden of injury, yet are underrepresented in clinical research. This study aimed to explore the reasons why urban Black men with serious injuries chose to participate in clinical research and their concerns about research participation. Methods: This qualitative study was conducted within the context of a larger study focused on psychological effects of serious injury in urban Black men; 83 Black men with serious injuries were recruited while hospitalized in an urban trauma center. Informed consent was obtained. Semi-structured interviews were conducted in participants’ homes three months after discharge from the hospital and were audiotaped, transcribed, and de-identified. Thematic content analysis was used to identify themes about perceptions of participating in clinical research. Results: The mean age of our sample was 38.2 years, and the mean injury severity score was 10.7 (SD 9.6). The majority (53.2 %) of injuries was due to interpersonal violence, and 47 % were due to unintentional mechanisms. Eight reasons for research participation emerged from the data: human connection, altruism/community, self-improvement, compensation, gaining knowledge, curiosity/interest, low risk, and reciprocity. Conclusions: A major finding was that injured urban Black men participated in clinical research for the opportunity for human and therapeutic connection. Despite some expressions of mistrust, participants were willing to participate for altruistic reasons rooted in community priorities, and as part of their recovery process post-injury

Seriously Injured Urban Black Men’s Perceptions of Clinical Research Participation

Purpose: Black men are uniquely vulnerable in American society and our health care system: they bear a disproportionate burden of injury, yet are underrepresented in clinical research. This study aimed to explore the reasons why urban Black men with serious injuries chose to participate in clinical research and their concerns about research participation. Methods: This qualitative study was conducted within the context of a larger study focused on psychological effects of serious injury in urban Black men; 83 Black men with serious injuries were recruited while hospitalized in an urban trauma center. Informed consent was obtained. Semi-structured interviews were conducted in participants’ homes three months after discharge from the hospital and were audiotaped, transcribed, and de-identified. Thematic content analysis was used to identify themes about perceptions of participating in clinical research. Results: The mean age of our sample was 38.2 years, and the mean injury severity score was 10.7 (SD 9.6). The majority (53.2 %) of injuries was due to interpersonal violence, and 47 % were due to unintentional mechanisms. Eight reasons for research participation emerged from the data: human connection, altruism/community, self-improvement, compensation, gaining knowledge, curiosity/interest, low risk, and reciprocity. Conclusions: A major finding was that injured urban Black men participated in clinical research for the opportunity for human and therapeutic connection. Despite some expressions of mistrust, participants were willing to participate for altruistic reasons rooted in community priorities, and as part of their recovery process post-injury

Community Violence Exposure and Positive Youth Development in Urban Youth

Youth in urban environments are exposed to community violence, yet some do well and continue on a positive developmental trajectory. This study investigated the relationships between lifetime community violence exposure (including total, hearing about, witnessing, and victimization), family functioning, and positive youth development (PYD) among 110 urban youth ages 10-16 years (54% female) using a paper and pen self-report survey. This cross-sectional study was part of an interdisciplinary community-based participatory research effort in West/Southwest Philadelphia. Almost 97% of the sample reported some type of community violence exposure. Controlling for presence of mother in the home and presence of father in the home, separate linear regression models for PYD by each type of community violence exposure indicated that gender and family functioning were significantly associated with PYD. None of the types of community violence exposure were significant in the models. Significant interactions between gender and presence of mother in the home and gender and family functioning helped better explain these relationships for some of the types of community violence exposure. Presence of mother was associated with higher PYD for girls, but not for boys. Boys with poor family functioning had lower PYD than girls with poor family functioning. This study helps to better delineate relationships between CVE and PYD by adding new knowledge to the literature on the role of family functioning. Points of intervention should focus on families, with attention to parental figures in the home and overall family functioning

Predicting the Future Development of Depression or PTSD After Injury

OBJECTIVE: The objective was to develop a predictive screener that when given soon after injury will accurately differentiate those who will later develop depression or posttraumatic stress disorder (PTSD) from those who will not. METHOD: This study used a prospective, longitudinal cohort design. Subjects were randomly selected from all injured patients in the emergency department; the majority was assessed within 1 week postinjury with a short predictive screener, followed with in-person interviews after 3 and 6 months to determine the emergence of depression or PTSD within 6 months after injury. RESULTS: A total of 192 completed a risk factor survey at baseline; 165 were assessed over 6 months. Twenty-six subjects [15.8%, 95% confidence interval (CI) 10.2-21.3] were diagnosed with depression, four (2.4%, 95% CI 0.7-5.9) with PTSD and one with both. The final eight-item predictive screener was derived; optimal cutoff scores were ≥2 (of 4) depression risk items and ≥3 (of 5) PTSD risk items. The final screener demonstrated excellent sensitivity and moderate specificity both for clinically significant symptoms and for the diagnoses of depression and PTSD. CONCLUSIONS: A simple screener that can help identify those patients at highest risk for future development of PTSD and depression postinjury allows the judicious allocation of costly mental health resources

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