A5016849074- Cerebral Palsy and Movement Disorders
- Family and Disability Support Research
- Infant Development and Preterm Care
- Nonmelanoma Skin Cancer Studies
- Nail Diseases and Treatments
- Cancer-related cognitive impairment studies
- Childhood Cancer Survivors' Quality of Life
- Cancer survivorship and care
- Pericarditis and Cardiac Tamponade
- Estrogen and related hormone effects
- Hematological disorders and diagnostics
- Palliative Care and End-of-Life Issues
- Healthcare innovation and challenges
- Genital Health and Disease
- Family Support in Illness
- Organ Donation and Transplantation
- Adolescent and Pediatric Healthcare
- Cutaneous Melanoma Detection and Management
- Cardiac tumors and thrombi
- Pharmacogenetics and Drug Metabolism
- Sexual function and dysfunction studies
- Tuberculosis Research and Epidemiology
- Plant Pathogens and Fungal Diseases
- Myasthenia Gravis and Thymoma
- Health Systems, Economic Evaluations, Quality of Life
Cerebral Palsy Alliance
2021-2025
The University of Sydney
2021-2025
Arcadia
2019-2024
Chris O’Brien Lifehouse
2022
Hospital Selayang
2011
Hospital Kuala Lumpur
2011
ABSTRACT Background The New South Wales (NSW) and Australian Capital Territory (ACT) Cerebral Palsy (CP) Register is a database of clinical demographic information from children with CP. A child CP resulting an insult to the developing brain sustained between 29 days 2 years age classified as having post‐neonatally acquired (PNN‐CP). In services, may meet criteria timing for PNN‐CP but have singular diagnosis acquired/traumatic injury. Objectives To implement evaluate new register...
The most recent cost estimates of cerebral palsy (CP) in Australia did not include out-of-pocket costs for families. This study aimed to: 1) describe and estimate people with CP their families by age gross motor function classification system (GMFCS) level; 2) measure financial distress. A cross-sectional quantitative survey design was used qualitative approaches to analyse open-ended questions. CP-specific co-designed lived experience. Adults carers were recruited from Australian...
To explore (i) the impact of unmet social needs on children with cerebral palsy and their families; (ii) enablers-, (iii) barriers to addressing needs.
This commentary is on the original article by Ding et al. pages 1369–1379 of this issue.
Despite the importance of knowing cognitive capabilities children with neurodevelopmental conditions, less than one-third cerebral palsy participate in standardized assessments. Globally, approximately 50% people have an intellectual disability and there is significant risk for domain-specific impairments majority palsy. However, assessment tools are not accessible to many palsy, as they require manual manipulation objects, verbal response and/or speeded response. As such, standardised may...
Mindfulness-Based Stress Reduction (MBSR) has not yet been evaluated for people with cerebral palsy (CP). The aims of this randomised control trial were to investigate whether a modified telehealth MBSR program could improve mindfulness and reduce depression, anxiety, emotion regulation difficulties among adults CP elevated anxiety and/or emotional difficulties. Participants (n = 31) no/mild intellectual impairment (90 min weekly, 9 weeks) group or wait-list group. Measurements collected...
We interviewed 57 parents of 33 children who died congenital heart disease to obtain their descriptions and perceptions own grief. Irrespective the child's age or length illness, consistently described a grief reaction characterized by an initial period shock lasting hours several weeks which evolved into four- six-month sadness/depression with somatic complaints, slowly progressed resolution through acceptance. No parent symptoms pathologic Only four surviving siblings demonstrated...
Neurodevelopmental disorders are a heterogeneous group of conditions with overlapping symptomatology and fluctuating developmental trajectories that transcend current diagnostic categorisation. There is need for validated screening instruments which dimensionally assess from holistic, transdiagnostic perspective. The primary aim to co-design Neurodevelopment Assessment Scale (NAS), user-friendly assessment inventory systematically screens all signs symptoms commonly encountered in...