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The study's aim was to determine the prevalence of depression and anxiety in children with Beckwith–Wiedemann syndrome (BWS) and their effects on social relationships and family acceptance. The Pediatric Symptom Checklist—35 items (PSC-35), Screen for Child Anxiety Related Emotional Disorders (SCARED), and the Vineland Adaptive Behavior Scale Second Edition (VABS-II) were administered to the children. The parental Acceptance Rejection/Control Questionnaire (PARQ/Control) and Zarit Burden Inventory (ZBI) were administered to parents. In total, 6 patients and 10 parents were included. Patients showed a significant presence of internalizing behavior in PSC-35 (mean, 7.66 ± 3.67), anxiety symptoms (SCARED: mean, 46.33 ± 17.50) and socialization difficulties (mean, 90.83 ± 10.09). Parents reported a perceived good acceptance (mean, 56.33 ± 1.03) and a moderate control (mean, 24.17 ± 1.83), but the burden level was ranked moderate to severe (mean, 59.33 ± 16.78). It was found that the severity of the burden level reported by parents was related to internalizing behavior (OR = 2.000; 95% CI = 0.479–3.521; p = 0.022) and anxiety symptoms (SCARED total score: OR = 3.000; 95% CI = 1.479–4.521; p = 0.005) of children. During psychological counseling in the context of BWS treatment, it is important to identify specific resources that can support patients and families in dealing with stress and identify any critical areas that could hinder the adaptation process. [ABSTRACT FROM AUTHOR]

Purpose: This study investigated the impact of the COVID-19 pandemic on mental health, quality of life, and family functioning in a sample of the general female population, exploring difficulties encountered in managing family and work responsibilities and burden of care when taking care of a loved one. This study was, moreover, aimed at investigating factors capable of influencing severe depressive symptomatology in the context of socio-demographics, traumatic events, individual vulnerability, and family functioning. Method: The sampling method used in this research was non-probability sampling. The survey took place during a Hospital Open Weekend (8–10 October 2021) organized by the National Gender Observatory on Women's Health "Fondazione Onda" on the occasion of the World Mental Health Day. Results: A total of 211 women were interviewed (mean age = 35.6, 53% living alone, more than 15% with financial difficulties, 47% exposed to the 2009 L'Aquila earthquake). More than 50% of the sample reported a higher complexity in managing their lives during the COVID-19 pandemic compared to their previous routine, with no statistically significant differences between working women and non-workers, although the latter obtained higher scores for depressive symptomatology and poorer quality of life. Compared to non-caregivers, female caregivers (22.3%) in charge of the care of loved ones affected by physical (10.9%) or psychiatric disabilities (11.4%) complained of a poorer quality of life, especially in general health perception (p = 0.002), physical function (p = 0.011), role limitations related to physical problems (p = 0.017), bodily pain (p = 0.015), mental health (p = 0.004), and social functioning (p = 0.007). Women caring for people affected by mental disorders seemed to experience a more significant worsening in vitality (p = 0.003) and social functioning (p = 0.005). Approximately 20% of the total sample reported severe depressive symptomatology. Previous access to mental health services (O.R. 10.923; p = 0.000), a low level of education (O.R. 5.410; p = 0.021), and difficulties in management of everyday lives during the COVID-19 pandemic (O.R. 3.598; p = 0.045) were found to be the main variables predictive of severe depressive psychopathology. Old age, good problem-solving skills, and ability to pursue personal goals were identified as protective factors. Conclusions: The COVID-19 pandemic underlined the need for support amongst emotionally vulnerable women with pre-existing mental health conditions, partly reflecting the cumulative effects of traumas. [ABSTRACT FROM AUTHOR]

This study aims to assess the efficacy of a psychoeducational family intervention (PFI) to reduce the severity of depressive symptoms and to improve psychosocial functioning and to increase social contacts in a sample of patients with major depressive disorder (MDD). The degree to which PFI will reduce patients' relapses, hospitalizations, and self-stigmatization and will improve their quality of life will also be assessed. Other secondary outcomes include the improvement of relatives' coping strategies, family burden, expressed emotions and quality of life. This non-profit, unfunded, national, multicentric randomized controlled trial with blinded outcome assessments will be carried out in 24 Italian university outpatient units. Families will be assessed at baseline and at 6, 12, and 24 months post-randomization. Our working hypothesis is that the PFIs will reduce the patients' severity of depressive symptoms, their relapses, and their hospitalizations, and that they will improve their psychosocial functioning and quality of life. We expect these results to be maintained after 12 and 24 months, albeit with a reduction in magnitude. The sample will consist of 384 patients randomized at a 1:1 ratio and stratified according to center, age, gender, and educational level. [ABSTRACT FROM AUTHOR]

Chronic diseases, such as childhood diabetes mellitus (DM), are a complex and continuous struggle as well as a great challenge both for the children who face the disease and for their parents. DM is characterized by the complex management of therapeutic treatments, thus causing physical and psychological complications infamily members. There are many families who, upon hearing the diagnosis of their child with DM, stand still in front of these new facts as their lives change. All these unprecedented conditions cause parents intense stress and discomfort, leading them to a mental burden, as the only thing that concerns them upon diagnosis is how the family will survive in the face of the current conditions they are experiencing as well as the future of the sick child. The purpose of this brief literature review is to present the research findings related to the psychological burden of families withchildren with DM, focusing on the quality of life and stress. [ABSTRACT FROM AUTHOR]

(1) Background: Phenotypic diversity and long-term health outcomes of individuals with urea cycle disorders (UCDs) have been described in detail. However, there is limited information on the burden on affected families. (2) Methods: To evaluate the family burden in parents with children suffering from UCDs, we used validated questionnaires. Socio-demographic characteristics were evaluated, and an adapted version of the Parental Need Scale for Rare Diseases questionnaire was used. The survey was conducted in families of UCD patients cared for at the University Children's Hospital Heidelberg. (3) Results: From April to November 2021, 59 participants were interviewed (mothers n = 34, fathers n = 25). The affected patients most frequently suffered from ornithine transcarbamylase deficiency (OTC-D) (female n = 12, male n = 12), followed by argininosuccinate synthetase deficiency (ASS-D, n = 13) and argininosuccinate lyase deficiency (ASL-D, n = 8). About one-third of the participants were "dissatisfied" or "extremely dissatisfied" with health professionals' disease knowledge. In addition, 30% of the participants reported a medium or high need for "additional information on the development of their children", and 44% reported a medium or high need "for information on available services". A majority of 68% reported a need for additional support regarding services such as support groups (42%) or psychological counseling (29%). (4) Conclusions: Our study indicates that there is an unmet need for sufficient information about the development of children with UCDs, as well as for information about available support services for families with UCD patients. Furthermore, the results highlight the importance of establishing or improving family-centered care approaches. This pilot study may serve as a template for the assessment of the family burden associated with other inherited metabolic diseases. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has presented many challenges to caregivers of children. Families with children with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD) are an understudied but potentially vulnerable population to changes during the outbreak. As such, the aim of this study was to contrast quality of life for caregivers of children with ADHD and/or ASD, before and during the pandemic, compared to caregivers of neurotypical (NT) children. Total, Parent Health-Related Quality of Life, and Family Functioning Summary Scores from the Family Impact Module of the Pediatric Quality of Life Inventory TM were contrasted among caregivers of children with ADHD, ASD, comorbid ADHD and ASD, and NT development. For all scores, caregivers of ADHD and/or ASD children reported lower quality of life, both before and during the pandemic, in comparison to caregivers of NT children. For all diagnoses, quality of life decreased during the pandemic, but caregivers of children with ADHD and/or ASD reported a greater decrease in quality of life than caregivers for NT children. There are limitations to this study in terms of the composition of the sample and the survey methodology, but we are able to conclude that caregivers of children with ADHD and/or ASD have been disproportionately affected by the pandemic, and it is imperative that these families receive additional resources and support to improve their quality of life.