Mental health dynamics between mothers and siblings of children with disabilities.

Introduction: When a child has a disability, their families face significant challenges that also impact parents' and siblings' mental health and adjustment. We examined the potential bidirectional relationships between parental mental health and sibling mental health and adjustment in families of children with a disability.

Methods: We utilized baseline and 12-month follow-up data from a randomized controlled trial of a brief intervention designed to enhance parent-sibling communication in families of children with a disability.

External Factors Influencing the Motivation and Performance of Staff in Their Nutritional Work With Adults With Intellectual Disabilities.

Background: Staff working in municipal care homes with adults with intellectual disabilities impact their diet significantly.

Aim: To explore how external factors influence staff's motivation and performance of nutritional work with these residents.

Method: Semi-structured qualitative interviews with 11 staff using systematic text condensation for analysis.

Inhibitory deficits in Klinefelter syndrome are secondary to deficits in the auditory and motor domain.

Deficits in several cognitive domains are prevalent in men with Klinefelter Syndrome (KS). Verbal deficits are among the most characteristic cognitive impairments of KS, yet other cognitive domains also exhibit deficits. Executive functions, especially working memory capacity and inhibitory control, are frequently affected as well.

Anxiety Symptom Trajectories Predict Depression Symptom Trajectories up to Four Years After CBT for Youth Anxiety Disorders.

Long-term data on depression symptoms after cognitive behavioral therapy (CBT) for youth anxiety disorders are scant. We examined depression symptoms up to four years post CBT for anxiety addressing youth age and gender, family social class, and parent mental health as predictors. The sample comprised 179 youth (M age at pre-treatment = 11.

A systematic review of the association between parent-child communication and adolescent mental health.

Background: This systematic review addresses how adolescent-rated parent-child communication (PCC) quality is related to adolescent mental health.

Methods: We performed a systematic literature search in Medline and APA PsycInfo, including peer-reviewed quantitative studies examining associations between adolescent-rated dyadic PCC quality and general as well as specific measures of adolescent mental health. Qualitative and case studies were excluded, as were studies reporting only parent-rated communication quality or instruments assessing other constructs than dyadic PCC.

What challenges do siblings of children with chronic disorders express to their parents? A thematic analysis of 73 sibling-parent dialogues.

Purpose: The study explored challenges experienced by siblings of children with chronic disorders, as expressed by siblings in parent-child dialogues.

Design And Methods: Seventy-three parent-child dialogues (M duration = 28.6 min) were analyzed using qualitative thematic analysis.

Autism traits, social withdrawal, and behavioral and emotional problems in a Norwegian cohort of adolescents with rare genetic disorders.

Background: Adolescents with rare genetic disorders represent a population that can be at risk in psychosocial terms. Despite its importance, the association of autism traits and social withdrawal in behavioral and emotional problems in adolescents with rare genetic disorders remains understudied.

Aim: The study aimed to empirically examine the clinical characteristics of adolescents with rare genetic disorders with a behavior theory-driven approach.

Weight reduction and dietary improvements in a cluster-randomised controlled trial for adults with intellectual disabilities.

Background: People with intellectual disabilities (IDs) have an increased risk of obesity and health concerns related to their nutritional status and dietary intake.

Objective: To assess the effectiveness of a multi-component intervention on weight, waist circumference (WC), clinical health parameters and dietary habits in a group of overweight and obese adults with mild-to-moderate ID.

Design: A 7-month cluster-randomised trial and a 7-month follow-up of the intervention group after the end of intervention when the group received usual care.

Executive control training for adolescents with ADHD: Study protocol for a randomised controlled trial.

Background: Attention-Deficit/Hyperactivity Disorder (ADHD) is one of the most prevalent neurodevelopmental conditions diagnosed during childhood and adolescence. In addition to the commonly observed symptoms of inattention, hyperactivity, and impulsivity, individuals with ADHD often experience impairments in executive functions (EFs). Goal management training (GMT) is a cognitive remediation intervention targeting EFs, with empirical support from studies with adult populations, including ADHD.

The development of SIBS-ONLINE, a group-based video conference intervention for siblings of children with chronic disorders and their parents.

Objective: During the last decade a knowledge-based group intervention called SIBS, aiming to prevent psychological difficulties in siblings of children with chronic disorders, has been developed and empirically evaluated. The results are promising, but SIBS has been difficult to implement in areas with low population density. To address the needs of low-density health regions a video conference-based version of SIBS, "SIBS-ONLINE", was developed.

Bidirectional genetic overlap between autism spectrum disorder and cognitive traits.

Autism spectrum disorder (ASD) is a highly heritable condition with a large variation in cognitive function. Here we investigated the shared genetic architecture between cognitive traits (intelligence (INT) and educational attainment (EDU)), and risk loci jointly associated with ASD and the cognitive traits. We analyzed data from genome-wide association studies (GWAS) of INT (n = 269,867), EDU (n = 766,345) and ASD (cases n = 18,381, controls n = 27,969).

Subjective versus objective sleep in men with Klinefelter syndrome.

Objectives: To investigate sleep among men with Klinefelter syndrome (KS).

Method: We compared the sleep domains latency, disturbance, and efficiency in 30 men with KS (M age = 36.7 years, SD = 10.

'Struggling to participate in everyday life': emerging adults' experiences of living with long-term health challenges.

Aim: To gain a deeper understanding of the experiences of participation in the everyday life of emerging adults living with long-term health challenges and how this influences their own quality of life.

Methods: Using an explorative study design, data were collected through in-depth interviews with a sample of 12 young people aged 18-29 years living with long-term health challenges in Norway.

Findings: The analysis identified one overarching theme of struggling to participate in everyday life, and four subthemes: the notion of being independent but also dependent, experiencing mismatch between needs and support, experiencing deprivation of spontaneity and feeling uncertain about the future.

Body mass index variation in adults with Williams syndrome: associations with predicted dietary intake and food behaviors.

Background: Dietary intake and body weight are important predictors of long-term health. However, few studies have focused on these topics in adults with genetic syndromes that have associated intellectual disability, such as Williams syndrome (WS).

Objective: In adults with WS, describe predicted dietary intake, food-related problems, and associations between body mass index (BMI) and possible factors contributing to differences in weight status.

Systemic immune profile in Prader-Willi syndrome: elevated matrix metalloproteinase and myeloperoxidase and reduced macrophage inhibitory factor.

Background: Prader-Willi syndrome (PWS) is a rare genetic neurodevelopmental syndrome with highly increased risk of obesity and cardiovascular disease (CVD). Recent evidence suggests that inflammation is implicated in the pathogenesis. Here we investigated CVD related immune markers to shed light on pathogenetic mechanisms.

A 15-20-year follow-up of mental health, psychosocial functioning and quality of life in a single center sample of individuals with differences in sex development.

The aim of the study was to present metal health, psychosocial functioning and quality of life (QoL) of children and adolescents with a difference in sex development (DSD) from their first visit in the newly established multidisciplinary team in 2002-2004 in Norway. A secondary aim was to explore mental health, psychosocial functioning and QoL in the same cohort patient's as for today and finally explore any childhood predictors for these outcomes in adulthood. The first part of the study took place in 2002-2004 in a mixed cohort of children and adolescents born with a DSD in 1982-2002, compared to a healthy comparison group.

A systematic review of social support for siblings of children with neurodevelopmental disorders.

Background: Social support is a protective factor for siblings of children with neurodevelopmental disorders.

Aims: We reviewed studies on social support received by siblings of children with neurodevelopmental disorders.

Methods And Procedures: We conducted a pre-registered systematic review (CRD42020207686), searching PsycINFO, MEDLINE, Web of Science, and Scopus.

Psychosocial Functioning in Siblings of Children With Rare Disorders Compared to Controls.

Siblings of children with chronic disorders are at increased risk of psychosocial problems. The risk may be exacerbated when the chronic disorder is rare and limited medical knowledge is available, due to more uncertainty and feelings of isolation. We examined mental health, parent-child communication, child-parent relationship quality, and social support among 100 children aged 8 to 16 years ( age 11.

The Role of Nutrition and Physical Activity as Trigger Factors of Paralytic Attacks in Primary Periodic Paralysis.

Background: Primary periodic paralysis (PPP) are rare inherited neuromuscular disorders including Hypokalemic periodic paralysis (HypoPP), Hyperkalemic periodic paralysis (HyperPP) and Andersen-Tawil syndrome (ATS) characterised by attacks of weakness or paralysis of skeletal muscles. Limited effective pharmacological treatments are available, and avoidance of lifestyle related triggers seems important.

Objective: Our aim was to search and assess the scientific literature for information on trigger factors related to nutrition and physical activity in PPP.

Virtual reality and naturalistic developmental behavioral interventions for children with autism spectrum disorder.

Background: Naturalistic Developmental Behavioral Interventions (NDBI) have been evaluated as the most promising interventions for children with autism spectrum disorder. In recent years, a growing body of literature suggests that technological advancements such as Virtual Reality (VR) are promising intervention tools. However, to the best of our knowledge no studies have combined evidence-based practice with such tools.

Factors influencing the opportunities of supporting staff to promote a healthy diet in adults with intellectual disabilities.

Background: Adults with intellectual disabilities living in residential houses have a high prevalence of obesity which is related to poor dietary habits.

Aim: The aim of this study was to assess supporting staff`s thoughts and experiences on factors influencing their opportunities to promote a healthy diet in adults with intellectual disabilities.

Methods: 13 supporting staff members were recruited from 11 different residential houses in a community.

Group intervention for siblings and parents of children with chronic disorders (SIBS-RCT): study protocol for a randomized controlled trial.

Background: Siblings and parents of children with neurodevelopmental disorders are at risk of mental health problems and poorer family communication. Some group interventions for siblings exist, but few have clearly described parent components and none are considered evidence-based.

Methods: We are conducting a randomized controlled trial comparing a five-session manual-based group intervention for siblings (aged 8 to 16 years) and parents of children with neurodevelopmental disorders to a 12-week waitlist, called SIBS-RCT.

Health service experiences among adults with hereditary spastic paraparesis or neurofibromatosis type 1.

Background: Persons with rare disorders may experience poorer health services due to limited knowledge about rare disorders among health professionals. Knowledge about how persons with rare disorders perceive health services can help inform service providers to enhance their practices.

Methods: We conducted a self-report survey among adults with the rare disorders hereditary spastic paraparesis (HSP; n = 108; mean age 57.