What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability.

Background: Appropriate support for the health of children with an intellectual disability by parents and healthcare professionals is pivotal, given the high risk of chronic conditions. However, there is limited research that has collected important insights from parents on their learnings for supporting their child's evolving healthcare needs.

Aim: This study focuses on parents' experiences and learnings from managing and supporting the health of their child with intellectual disability.

Online health literacy resources for people with intellectual disability: protocol for a grey literature scoping review.

Introduction: People with intellectual disability are at risk of poor physical and mental health. Risks to health are compounded by poor health literacy, that is, reduced capacity to access health services, respond quickly to changes in health status and navigate care pathways. Building health literacy skills is a strength-based way to increase health and optimise the use of healthcare services.

Process evaluation of a randomised controlled trial intervention designed to improve rehabilitation services for Aboriginal Australians after brain injury: the Healing Right Way Trial.

Background: Healing Right Way (HRW) aimed to improve health outcomes for Aboriginal Australians with stroke or traumatic brain injury by facilitating system-level access to culturally secure rehabilitation services. Using a stepped-wedge randomised controlled trial (RCT) design (ACTRN12618000139279, 30/01/2018), a two-pronged intervention was introduced in four rural and four urban hospitals, comprising 1.Cultural security training (CST) for staff and 2.

Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability.

Background: Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making.

Individual-Level Risk and Resilience Factors Associated with Mental Health in Siblings of Individuals with Neurodevelopmental Conditions: A Network Analysis.

Siblings of individuals with neurodevelopmental conditions (NDCs) are exposed to unique family environments and experience a range of psychosocial risk and resilience factors. Networks of self-reported risk, resilience, and neuropsychiatric variables were estimated for siblings of individuals with ( = 235) and without ( = 480) NDCs ( = 715, mean age 22.40 years, 76% female, 74% White Caucasian).

Psychosocial Interventions and Support Groups for Siblings of Individuals with Neurodevelopmental Conditions: A Mixed Methods Systematic Review of Sibling Self-reported Mental Health and Wellbeing Outcomes.

Siblings of persons with neurodevelopmental conditions (NDCs) have increased risk of poorer psychosocial functioning. This systematic review evaluated quantitative and qualitative evidence on sibling mental health and wellbeing outcomes following psychosocial interventions and the risk and protective factors associated with post-intervention outcomes. From 2025 identified studies published from 1991 to 2022 across ten databases, 24 studies were included.

Participant experiences of intervention to detect and manage familial hypercholesterolaemia in Australian general practice: A qualitative descriptive study.

Background And Objectives: General practitioners (GPs) are ideally placed to have a much larger role in detection and management of familial hypercholesterolaemia (FH) among their patients. The aim of this study was to seek the reflections of practice staff and newly diagnosed patients with FH on the implementation of an FH model of care in the general practice setting.

Method: Qualitative descriptive methodology was used.

Children and adolescents are not small adults: toward a better understanding of multimorbidity in younger populations.

Multimorbidity is of an increasing importance for the health of both children and adults but research has hitherto focused on adult multimorbidity. Hence, public awareness, practice, and policy lack vital information about multimorbidity in childhood and adolescence. We convened an international and interdisciplinary group of experts from six nations to identify key priorities supported by published evidence to strengthen research for children and adolescent with multimorbidity.

Study protocol for a prospective process evaluation of a culturally secure rehabilitation programme for Aboriginal Australians after brain injury: the Healing Right Way project.

Introduction: Aboriginal and Torres Strait Islander (hereafter respectfully referred to as Aboriginal) people are Australia's First Peoples, having the longest continuous culture in the world and deep spiritual connections with ancestral land. Improvements in their health and well-being is a major policy goal of Australian governments, as the legacy of colonisation and disruption of cultural practices contribute to major health challenges. Lack of culturally secure services impacts participation of Aboriginal people in health services.

Using a trauma informed practice framework to enhance understanding of and identify support strategies for behavioural difficulties in young people with Prader-Willi syndrome.

Background: Behavioural support for young people with Prader-Willi syndrome (PWS) is necessary in home and school environments. The Trauma Informed Practice (TIP) framework has been used to support young people with complex behavioural needs in school settings.

Aims: To identify parent and professional perspectives on behavioural challenges experienced by young people with PWS and strategies for supports, to inform understanding of how they are aligned with the TIP framework.

A flexible computational pipeline for research analyses of unsolved clinical exome cases.

Exome sequencing has enabled molecular diagnoses for rare disease patients but often with initial diagnostic rates of ~25-30%. Here we develop a robust computational pipeline to rank variants for reassessment of unsolved rare disease patients. A comprehensive web-based patient report is generated in which all deleterious variants can be filtered by gene, variant characteristics, OMIM disease and Phenolyzer scores, and all are annotated with an ACMG classification and links to ClinVar.

Prevalence estimates of mental health problems in children and adolescents with intellectual disability: A systematic review and meta-analysis.

Background: Children and adolescents with intellectual disability are at risk of developing psychiatric symptoms and disorders; yet, the estimates reported in the literature have been inconsistent, presenting a potential barrier for service planning and delivery. Sources of variability could arise from differences in measurement instruments as well as subgroup membership by severity of intellectual disability, gender and age. This systematic review aimed to address these gaps.

Systematic Review and Meta-analysis: Mental Health in Children With Neurogenetic Disorders Associated With Intellectual Disability.

Objective: The behavioral phenotype of neurogenetic disorders associated with intellectual disability often includes psychiatric comorbidity. The objectives of this systematic review and meta-analysis were to systematically review the prevalence of psychiatric disorders and symptoms in children and adolescents with these disorders and compare phenotypic signatures between syndromes.

Method: MEDLINE and PsycINFO databases were searched for articles from study inception to December 2018.

The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: a systematic review and meta-analysis.

Aim: Mental health conditions and problems are often reported in children and adolescents with cerebral palsy (CP). A systematic review was undertaken to describe their prevalence.

Method: MEDLINE and PsycINFO databases from 1996 to 2016 were searched and reference lists of selected studies were reviewed.

Assisted movement with enhanced sensation (AMES): coupling motor and sensory to remediate motor deficits in chronic stroke patients.

Background: Conventional methods of rehabilitation in patients with chronic, severe motor impairments after stroke usually do not lessen paresis.

Objective: A novel therapeutic approach (assisted movement with enhanced sensation [AMES]) was employed in a medical device phase I clinical trial to reduce paresis and spasticity and, thereby, to improve motor function.

Methods: Twenty subjects more than 1 year poststroke with severe motor disability of the upper or lower extremity were studied.

Children's posture and muscle activity at different computer display heights and during paper information technology use.

Objective: The 3-D posture and muscle activity in the neck and upper limb were assessed in children using high-, mid-, and book-level displays, which correspond to working conditions frequently observed when children interact with computers or books and paper.

Background: The 3-D posture and muscle activity of children reading and inputting data with computers and paper had not been previously assessed.

Methods: Twenty-four children aged 10 to 12 years and of normal height performed an interactive task involving reading from a book and writing on paper or reading from a computer display and inputting data using a mouse and keyboard.

Illusory changes in head position induced by neck muscle vibration can alter the perception of elbow position.

Acuity for elbow joint position sense (JPS) is reduced when head position is modified. Movement of the head is associated with biomechanical changes in the neck and shoulder musculoskeletal system, which may explain changes in elbow JPS. The present study aimed to determine whether elbow JPS is also influenced by illusory changes in head position.

Postural muscle tone in the body axis of healthy humans.

Across the entire human body, postural tone might play its most critical role in the body's axis because the axis joins the four limbs and head into a single functioning unit during complex motor tasks as well as in static postures. Although postural tone is commonly viewed as low-level, tonic motor activity, we hypothesized that postural tone is both tonically and dynamically regulated in the human axis even during quiet stance. Our results describe the vertical distribution of postural muscle tone in the neck, trunk, and hips of standing human adults.