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Showing results for "clinical trials"

Longitudinal trajectory of gross motor skills in school-aged children with Rett syndrome

In children with Rett syndrome, this study aimed to (1) describe gross motor skill trajectories; and (2) analyse the influences of genetic variant and comorbidities. This was a prospective longitudinal study conducted at the Danish National Center for Rett Syndrome 2008 to 2022. The Rett Syndrome Gross Motor Scale (RSGMS) was administered, and clinical data collected at each visit.

Self-Compassion in University Students With ADHD: A Qualitative Exploration

This study explored the lived experience of university students with attention-deficit hyperactivity disorder (ADHD) and identified factors that help or hinder their capacity for self-compassion in higher education. Fourteen university students with ADHD aged 18–25 participated in individual semi-structured interviews exploring experiences of self-compassion in academic contexts.

Exploring Oral Health Related Quality of Life in Rett Syndrome Using Directed Content Analysis

No validated oral health-related quality of life (OHRQOL) instrument currently exists for those with severe intellectual and developmental disabilities and who communicate non-verbally. This qualitative study aimed to explore the domains that were important to the oral health-related quality of life in individuals with Rett syndrome.

Access to Oral Healthcare in Individuals With Rett Syndrome: A Qualitative Study of Parent Perspectives

Intellectual and developmental disabilities (IDD) are varied in their nature and presentation. Barriers to oral healthcare are reported in studies of general populations with IDD but these may not reflect the barriers experienced by individuals with rare disorders such as Rett syndrome.

New funding targets diabetes and heart disease health service gaps

Researchers will work with Aboriginal & Torres Strait Islander women in SA to devise better ways to care for women at risk of pregnancy complications caused by diabetes and cardiovascular disease.

Lived Experiences of Empowerment in Parents of Trans Children and Adolescents

The construct of empowerment is associated with beneficial outcomes in numerous populations with well-being across multiple domains. Within families, empowerment has been found to be related to both parent and child well-being. As such, empowerment appears to be a promising concept to support parents of young (< 18 years) trans and gender diverse children and adolescents; however, what empowerment means for parents of trans children and adolescents is not known.

“An expected part of being trans”: The experienced and anticipated stigma of trans adolescents

Trans adolescents experience and anticipate stigma to the detriment of their mental health; however, trans adolescents have rarely been consulted about their stigma experiences. This study aimed to understand trans adolescents’ lived experiences of experienced and anticipated stigma.

Understanding Disclosure Decisions in Parents of Children with Attention Deficit/Hyperactivity Disorder

Parents of children with attention-deficit/hyperactivity disorder (ADHD) often make disclosure decisions about their child's ADHD on their behalf. While disclosure can facilitate access to support, it risks stigma. Despite ADHD being one of the most common neurodevelopmental conditions, little is known about parent's experiences in relating information about their child's ADHD diagnosis or medication use, to others.

Comparing education with and without indirect contact to reduce stigma towards youth at-risk for psychosis

Stigma towards individuals with mental health concerns is a global issue, including among young people at ultra-high risk (UHR) for psychosis. This study compared two written anti-stigma resources: (a) Education and (b) Lived Experience + Education, among young adults and parents/caregivers.

Genotype and sleep independently predict mental health in Rett syndrome: An observational study

Rett syndrome is a genetically caused neurodevelopmental disorder associated with severe impairments and complex comorbidities. This study examined predictors of anxiety and depression in Rett syndrome, including genotype.