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our directory of newsletters, articles, therapies, videos, policies, communities and other LINKs about childhood disability

Articles

AllGeneral disabilities
Attention deficit hyperactivity disorder Autism spectrum disorder Cerebral palsy Congenital Heart Disease Down syndrome Epilepsy Global developmental delay High Risk Newborn Juvenile Arthritis Traumatic Brain Injury

Communication is Key: Are Parents Happy with the Way a Diagnosis of Cerebral Palsy is Announced?

Learn about Cerebral palsy

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Good communication is a key part of healthcare. In this study, researchers were interested in understanding whether parents were satisfied with the way a diagnosis of cerebral palsy was communicated to them, and what factors related to that satisfaction.

How Sleep Affects Children with Cerebral Palsy

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Sleep disorders can have a negative effect on children’s behavior and school performance. This article explores different types of sleep problems impacting children with cerebral palsy and their families.

Cerebral Palsy: Measurement and Classification Systems

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Classification systems are an important part of care. They help physicians assess needs. Determining subtype of Cerebral Palsy allows physicians to assess pathogenesis, type of motor impairment and burden of comorbidity associated with cerebral palsy. Alternatively, GMFCS allows physicians to measure the severity of motor impairment and helps inform the progress of treatment and rehabilitation.

Is horseback riding an effective therapy for children with cerebral palsy?

Learn about Cerebral palsy

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The use of horseback riding can be an effective means of intervention for children with cerebral palsy and a useful addition to, or variation upon, regular therapy.

What do we know about fragile X?

Learn about Autism spectrum disorder

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Little is known about mental deficits associated with the Fragile X permutation. In this study, the authors focused on finding out if social cognition – a mental impairment commonly associated with Fragile X syndrome – is apparent in children with a Fragile X permutation.

Uncovered: infant open-heart surgery and the mental well-being of parents

Learn about Congenital Heart Disease

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This study looked at the mental health and wellbeing of children with congenital heart problems and the stress levels of their parents.

Blood flow and the brain – how infant heart surgery impacts brain health

Learn about Congenital Heart Disease

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Researchers at the Harvard School of Public Health studied brain health following heart surgery in very young infants. They found that approximately one in six of the infants showed problems in their ability to regulate blood flow in the brain.

Is heart surgery related to longterm neuromuscular problems?

Learn about Congenital Heart Disease

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This study looked at whether having open heart surgery as a child was linked to neurologic and motor problems later in life. To find this out, a group of survivors of infant open-heart surgery was evaluated by scientists. The scientists found that about 25% of the children had some type of neurological delay.

Open heart surgery in newborns: what are the challenges?

Learn about Congenital Heart Disease

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Children with congenital heart defects are at high risk for certain developmental delays as they reach school age. It is important that the child’s progress is carefully monitored by the cardiology team at key points in the child’s development, so that children with difficulties in particular domains can be referred to specialists for appropriate interventions and resource supports.

Are children with heart conditions receiving the rehabilitation services they NEED?

Learn about Congenital Heart Disease

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The purpose of this study was to describe the educational and rehabilitation services being provided to young children with heart conditions who had had open-heart surgery.

Is infection linked to brain injury in babies born with CHD?

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Brain injury after birth is common for newborns with congenital heart disease. That is because heart disease contributes to immature brains, similar to the brains of babies who are born prematurely. Since infection increases the risk of brain injury in premature newborns, it seems reasonable to think that it might also increase the risk of brain injury in newborns with congenital heart disease. However, a study conducted by American researchers failed to find a significant link between infection and later brain injury in newborns who had undergone surgery to treat heart disease.

How does adherence to medication and exercise impact children with juvenile arthritis?

Learn about Juvenile Arthritis

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Results of this study demonstrated that moderate adherence to medication was associated with a lower active joint count, while moderate adherence to exercise was associated with a better functional score and lower pain. Both high and moderate adherence to exercise were associated with a parental perception of global improvement.

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LINK Highlight

Ensuring the mental health of children 5-12 years old before and after the COVID-19 pandemic

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This newsletter evaluates the impact of the Covid-19 pandemic on the mental health of children 5- 12 years of age and the unique challenges experienced by children with neurodevelopmental disorders. The aim is to provide recommendations to support children’s mental health during and after the pandemic.

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