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Descriptive contents analysis of ParticiPAte CP: a participation-focused intervention to promote physical activity participation in children with cerebral palsy

ParticiPAte CP is a participation-focused therapy intervention that is effective to increase perceived performance of physical activity participation goals in children with cerebral palsy. We aimed to characterise the contents of ParticiPAte CP using validated behaviour change frameworks.

Perspectives on the origin and therapeutic opportunities in Down syndrome-associated leukemia

It is now well accepted that germline or de novo genetic alterations predispose to cancer development, especially during childhood. Among them, constitutive trisomy 21, also known as Down syndrome (DS), has been shown to predispose to acute leukemia affecting both the myeloid (ML-DS) and lymphoid (DS-ALL) lineages. ML-DS is associated with a good prognosis compared to children without DS, due in part to a higher sensitivity to conventional chemotherapy.

Speech and language therapists’ training and service delivery with children and adults with neurogenic communication disorders from culturally and linguistically diverse backgrounds

Speech and language therapists' (SLT) practice with cultural and linguistic diverse (CALD) populations with acquired and congenital neurogenic communication disorders in Denmark and Sweden is becoming more urgent due to demographic changes.

Associations between genotype, phenotype and behaviours measured by the Rett syndrome behaviour questionnaire in Rett syndrome

Rett syndrome (RTT) is a rare neurodevelopmental disorder with developmental impairments, comorbidities, and abnormal behaviours such as hand stereotypies and emotional features. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed to describe the behavioural and emotional features of RTT.

Using Focussed Ethnography to Observe and Understand the Actions and Interactions of People With Prader-Willi Syndrome When They Exercise at a Community Gym: A Protocol

Exercise for people with Prader-Willi syndrome (PWS) is important for their health and wellbeing and can provide opportunities for community participation. However, they may find it difficult to participate in some contexts, such as community gyms because social and environmental barriers in these settings may compound difficulties caused by physical impairments or intellectual disability.

The Feasibility of Personalized Endpoints in Assessing Treatment Outcomes for Rare Diseases: A Pilot Study of Goal Attainment Scaling in SCN2A-Associated

For individuals living with rare neurodevelopmental disorders, particularly those who are at the most severe end of the spectrum, standardized outcome measures may lack the sensitivity to capture small but meaningful changes. 

Codesign and knowledge translation of the Strength-based, Tiered, Accessible Resources and Supports (STARS) for Kids study to identify and support child development

Many children and their families, especially those from priority populations, experience barriers to accessing high-quality early childhood health, education, social and legal services. Further, these families are often under-represented in service planning and research; hence innovations are not designed to meet their needs. Our aim is to codesign with families and the wider community, a Strength-based, Tiered, Accessible Resources and Supports for Kids (STARS for Kids) programme to optimise child development, parental mental well-being, and family psychosocial needs in the first 2000 days from pregnancy to start of school

What Parents, Teachers and Clinicians Know About the Features of Developmental Dyslexia and Its Intervention: A Scoping Review

Despite decades of research, misconceptions about developmental dyslexia remain widespread among those responsible for identifying and supporting affected children. Identifying the nature and persistence of these beliefs is essential to improving practice and policy. We conducted a scoping review to map the understanding of developmental dyslexia among teachers, parents and clinicians by identifying their beliefs about its features and interventions.

Understanding parents’ experiences and needs when managing menstruation with young people with intellectual disability

Menstruation can be complex and challenging to manage, including for those with intellectual disability. People with intellectual disability experience additional barriers that prevent adequate access to information and support. Parents play an important role in supporting young people with intellectual disability with menstruation.

Parenting satisfaction and broader autism phenotype associated with depression, anxiety and stress in caregivers of infants showing early autistic features

While parenting self-efficacy and broader autism phenotype (BAP) have been linked to caregiver depression, anxiety and stress at specific points in time, their influence on longer-term mental health trajectories remains unknown, especially for caregivers who participate in support programs for their infants with very-early autistic features.