Policies aimed at limiting COVID-19 spread during the pandemic generated dissatisfaction and resistance as they limited privileges or were perceived to infringe on individuals' rights. Simultaneously, pandemic control and risk mitigation practices are seemingly subject to social resistance, just as other personal risk mitigating practices like seat belt use are. This analysis contributes to understanding U.S. resident perceptions of and compliance with public health pandemic control measures in January 2021. U.S. resident agreement with societal values statements as they pertain to healthcare, societal obligations to protect the elderly and children, and individual rights were studied. For all personal viral spread reducing behaviors studied, likelihood of participation increased with increasing agreement that: healthcare is a human right; the respondent wears a seat belt; we have a societal responsibility to protect the elderly; and having themselves or someone in their household in the higher risk group for COVID-19 complications. Agreement that gun ownership was a right decreased the likelihood of participation in any of the personal behaviors that affect viral spread. This study aims to understand societal perceptions of individual responsibility and rights relative to societal values and responsibilities, which has implications for future public health policy discussions.
Abstract With the aging of the Baby Boom generation, increasing numbers of older adults require assistance in their daily lives and most help comes from family members. Delays in childbearing mean many adult elder care providers are simultaneously raising children. Although past research has documented disparities in psychological distress and financial costs, less is known about the social costs resulting from elder caregiving and how this varies by parental status. We examine the social costs of elder caregiving by comparing elder and child care configurations to investigate three questions. First, do the daily time use patterns of elder caregivers differ by parental status? Second, do the daily time use patterns of elder caregivers differ by caregiving intensity? Third, does caregiving intensity moderate associations of elder caregiving and parental status on daily time use? We address these questions using nationally representative time diary data from the 2011-2017 American Time Use Survey (ATUS).
Abstract This study explores the effects of environmental disruption on older adult well-being, recovery and resilience following Hurricane Katrina. It is based upon the Gulf Coast Child and Family Health Study, a longitudinal cohort of 1,079 residents from Louisiana and Mississippi highly affected by the storm. Using five waves of data collected over the last 12 years, analyses examine the drivers of long-term recovery by age group, including factors such as household income, physical health, mental health, stable housing and social support. Path analyses compare the influence of these drivers on recovery among younger adults (18-54), the young-old (55-64), mid-old (65-74) and old-old (75+). Results demonstrate that each age group relies on specific factors to improve their recovery, and that only a small number of factors are critical for older adult recovery. Results can help identify points of intervention for disaster recovery planning that can facilitate long-term recovery for older adults.
This study explored the extent to which parents of deaf children in Al-Kharj use Saudi Sign Language (SSL), the challenges they encounter in learning and using the language, and their suggestions for improving communication with their children. A qualitative approach was employed, using semi-structured interviews with a purposive sample of 14 parents. Data were analyzed thematically. The findings indicate that most parents had no prior exposure to sign language before their child's diagnosis and relied largely on self-initiated learning due to limited institutional support. Participants reported difficulties expressing emotions and abstract concepts in SSL and often supplemented signing with facial expressions or written communication. Parents also emphasized the need for specialized training centers and culturally appropriate Arabic visual learning resources. Overall, the findings suggest that supporting parents in learning SSL may contribute to improved communication, stronger emotional connections, and enhanced social and educational participation for deaf children in the Saudi context.
Background Solid-organ transplantation is the optimal treatment for children and adolescents with end-stage organ failure. However, the biopsychosocial challenges faced jointly by this paediatric population have received little attention. This study is one of the few qualitative studies based on focus groups to identify the unmet care needs perceived by transplanted adolescents and parents of paediatric transplant recipients throughout the pre-, peri-, and post-surgical phases of various types of solid-organ transplantation. Methods Qualitative data was collected using a purposive sample selected according to the concept of information power at the Children's Hospital of La Paz University Hospital (Madrid, Spain). The adolescent dataset comprised one focus group with four adolescent transplant recipients and one additional participant who completed an individual in-depth interview using the same interview guide. The parent dataset consisted of one focus group with five parents of paediatric transplant recipients. A biopsychosocial theoretical framework and semi-structured moderating guide were used. Participants first answered open-ended questions about desired healthcare improvements, followed by targeted questions on biomedical, psychological, and social issues that were not spontaneously addressed. No further focus groups with additional participants were required, as theoretical sufficiency had been attained. Thematic framework analysis was used to examine the data, involving familiarisation, identifying a thematic framework, indexing, charting, mapping, and interpretation. Finally, the COnsolidated criteria for REporting Qualitative research (COREQ) were followed. Results Significant unmet care needs were identified throughout the transplantation process, particularly in the social and psychological domains. Participants reported concerns regarding long travel distances to hospitals, extended waiting times for outpatient visits, limited access to academic support, and insufficient peer and family support. The need for a designated social work contact person, compassionate healthcare interactions, and consistent access to mental health care was also highlighted. Conclusion The findings will guide the development of prehabilitation programs and longitudinal support interventions for solid-organ transplant patients and their families, emphasising the need to understand their experiences and unmet needs to enhance healthcare and clinical outcomes. Clinical trial registration The study protocol was registered at clinicaltrials.gov (NCT05441436). De-identified individual participant data will be made available in the Supplementary Material File.
Garrido-Bolton J, de la Vega R, Bravo-Ortiz MF et al.
Abstract High grade gliomas (HGG) in children carry a dismal prognosis. Standard therapy includes resection when possible, radiotherapy and sometimes the addition of temozolomide. There is no standard treatment for progression or relapse. Since November 2018 we have offered upfront molecular testing to all children with HGG who had biopsy/ resection. Testing was mainly done by next generation sequencing panel, and some had research based methylation profiling and RNA seq. We aimed to see whether families chose to receive additional investigational treatment as a result of the molecular testing results and whether the treatment involved participation in a clinical study, or whether treatment was compassionate. A total of 22 patients aged 2.8-16.8 years with HGG had a biopsy/resection over this three year period. Thirteen had diffuse midline glioma (DMG) of which 11 had the H3K27 mutation, and 9 were cortical. Six children had underlying predisposition syndromes: mismatch repair deficiency (n=3 proven + 1 highly suspected), neurofibromatosis1 (n=1), Li-Fraumeni (n=1). All the cortical gliomas had potential treatment options based on their molecular testing. 10/22 (45%) children received investigational therapy of which only three participated in a clinical study while the rest received compassionate therapy. Compassionate treatments included BRAF/MEK inhibitors (n=4), Larotrectinib (n=1), and immune checkpoint inhibitors (n=2). Of the 12 who did not receive investigational therapy, four, all cortical, have potential therapy options but are currently in remission. Of the remaining eight, two had very rapid clinical deterioration and died, and six (all DMG) did not wish/ were unable to travel abroad and no relevant clinical study was available locally. We conclude that the families of children with HGG are highly motivated to receive investigational therapy. Upfront molecular testing of these tumors, especially for cortical HGG, is imperative and there is a growing need for accessible clinical studies.
Background Children with sickle cell disease (SCD) suffer from vaso-occlusive crises, extremely painful episodes that may require hospitalization. Traumatic experiences during hospitalization and frequent pain experiences may lead to psychological distress and the development of (subclinical) posttraumatic stress disorder (PTSD). Children with SCD also experience elevated pain interference (the negative impact of pain on daily life), which research suggests may be more strongly associated with psychological than biological factors. Due to the association between psychological distress and pain, Eye Movement Desensitization and Reprocessing (EMDR), originally developed for treating PTSD, has recently been investigated for its potential to reduce pain. However, its effectiveness has not been studied for children and for SCD populations with the aim of reduction in pain interference. Methods In this single-center randomized controlled trial children and adolescents (aged 6-18 years) with SCD and clinical relevant scores on pain interference will be randomized to either EMDR therapy (n = 20) or waiting list control group (n = 20). Waiting list participants were reallocated to EMDR after 9 weeks. Follow-up was conducted 3-months post-treatment. Primary outcome is pain interference. Secondary outcomes include PTSD symptoms, anxiety and depressive symptoms, physical mobility, number of painful days, pain intensity, pain medication use and school absence, with additional outcomes assessing themes of pain and trauma-related memories and EMDR feasibility. Discussion This paper outlines the study protocol of a randomized controlled trial aiming to investigate the efficacy of EMDR therapy in reducing pain interference in the lives of children with SCD. If proven effective, this will be a promising intervention to reduce pain interference and chronic pain experienced by this group, with the advantage of being a non-pharmacological and non-invasive intervention. This method may also hold potential for children living with chronic pain of other causes. Trial registration clinicaltrials.gov, NCT07001631, retrospectively registered on May 23rd 2025, clinicaltrials.gov/study/NCT07001631.
Background The preschool environment is a critical determinant of children movement behaviour; however, evidence integrating the 24-h movement behaviour remains scarce, especially in the global south. Objective To identify the association between the preschool environment and 24-h movement behaviour in Uruguayan preschoolers. Methods A cross-sectional study was conducted with 112 preschoolers (45.32 ± 6.40 months) from Rivera, Uruguay. Movement behaviours were measured using accelerometry (Actigraph, wGT3X-BT) and operationalized as a 24-h composition. The preschool environment was audited in six domains: i) teacher role, ii) teacher training and education for family, iii) school policies, iv) indoor equipment, v) outdoor equipment, and vi) outdoor infrastructure. Multivariate linear regression models between preschool environment and isometric log-ratio (ilr) coordinates of movement behaviours were conducted. Results The outdoor equipment environmental predictor significantly associated with the 24-h movement behaviours composition (F = 3.40, p = 0.020), favouring the increase moderate-to-vigorous physical activity MVPA (β = 0.10, p = 0.027). Conclusions This research highlights Outdoor Equipment (availability, quantity and accessibility for preschoolers) as a key factor in promoting the movements behaviour and levelling the playing field for girls in moderate-to-vigorous physical activity.
Fernandez-Gimenez S, Martins CL, Pintos-Toledo E et al.
Introduction Modern teenagers spend most of their lives on social networks and the Internet, meeting various needs. At the same time, more detailed research is needed on how specific Internet use affects various aspects of the psychological state. Objectives The objective is to identify how the main goals of Internet use by adolescents are related to their subjective safety on the Internet and self-assessment of health. Methods The study involved 480 participants from 15 to 18 years old. We analyzed the main reasons for respondents’ use of the Internet (7 main goals were highlighted) and uncovered the relationship between the main goals of Internet use, self-assessment of health and subjective safety on the Internet. Results Adolescents who identified communication (t = -2.450, p=0.015) and shopping and receiving services as their main goals for using the Internet rated their health as significantly worse (t = -3.170, p = 0.002). Young men who use the Internet more often as a source of information feel significantly less secure on the Internet (t = -2.237, p=0.026), as do those who use the Internet more often to expand communication in social networks (t = -2.040, p=0.043). For girls, the goals of using the Internet and the sense of subjective security on the Internet were not significantly related. Conclusions Using the Internet to communicate, buy and receive services, and search for information can negatively affect the assessment of own health and subjective safety, especially among young people. The research was supported by the Russian Science Foundation, with the grant 15-18-00109.
Abstract Background Childhood trauma (CT), a generic term encompassing experiences of severe abuse and neglect during childhood and adolescence, has been established as an important risk factor for the emergence of psychosis. Among the potential pathways involved in the CT-psychosis association, Theory of Mind (ToM) disruption holds a central position. ToM reflects the ability to attribute distinct mental states to oneself and other people, and correctly infer the beliefs, wishes, intentions and dispositions of others in order to predict their behavior and produce proper social responses. ToM is further elaborated in 1st order ToM (ToM1: the ability to understand that someone may hold a false belief about the state of the world) and 2nd order ToM (ToM2: the ability to understand that one person may hold a false belief about the belief of another person). Research shows that patients with schizophrenia-spectrum psychosis (SSP) exhibit marked deficits in ToM. CT may increase SSP risk by disrupting the emergence of normal ToM skills, thus inducing a vulnerability for cognitive errors, perceptual aberrations and impaired reality testing. Our study sought to explore the effect of CT on ToM performance in a group of SSP patients and a healthy control group (HC). Methods We compared 63 SSP patients to a healthy control group on measures of CT and ToM. CT (presence of parental antipathy, parental neglect, physical abuse, sexual abuse) was assessed with the Childhood Experience of Care and Abuse Questionnaire (CECA.Q). ToM1 and ToM2 performance was measured with the Perception of Social Inference Test (PESIT). Chi-squared analysis was performed to compare CT rates between SSP patients and HCs. Mann-Whitney U tests were employed to detect differences in ToM between the two groups. Within each group, the impact of CT and polytraumatization (accumulation of different CT types) on ToM performance was examined. Results SSP patients displayed significantly higher CT rates (χ2 (1, N = 124) = 34.5, p < .001) and worse ToM performance (ToM1: U = 653,5, p < .001; ToM2: U = 435,5, p < .001) than HCs. SSP inpatients were 11.6 times more likely to have been exposed to severe CT than HCs. Within the SSP group, CT was associated with increased ToM2 deficits (U = 259, p = .020), while polytraumatization was negatively correlated to both ToM1 (rs = -.297, p = .020) and ToM2 (rs = -.341, p = .007) performance. Maternal antipathy (U = 207, p = .036) and neglect (U = 148, p = .017) were the CT subtypes associated with worse ToM2 performance. No similar effects were detected within the HC group. Discussion Our finding of ToM deficits in SSP patients may indicate a bidirectional association, involving on the one hand a negative effect of psychotic illness on ToM skills, and on the other hand a vulnerability towards psychosis induced by severe, early disruptions in normal ToM acquisition. Worse ToM performance in SSP patients with cumulative CT may signify an additive or synergistic effect of CT and psychosis on ToM skills. The involvement of maternal antipathy and neglect in the aforementioned association highlights the pivotal role of the mother in the development of the child’s capacity to envision distinct mental states in self and others, a prerequisite for self-awareness and self-other individuation. The failure to detect similar effects in HCs may be attributed to the low frequency of CT in this group, potentially restricting the strength of this analysis. On the same matter, another explanation could be that CT by itself is not a sufficient condition for ToM impairment, and only becomes relevant when it acts in synergy with other harmful processes inherent in psychosis.
