Background The emergence of genetic and genomic sequencing approaches for pediatric
patients has raised questions about the genomic health literacy levels, attitudes toward …

Background Parents of children who have a congenital anomaly can experience significant
worry about their child's health. Access to clear, helpful, and trustworthy information can …

As uptake of rapid genome sequencing (GS) in the neonatal period steadily increases, a
clinical genetics service that is optimized to the needs of parents becomes increasingly …

Parents of racialized children and children with disabilities experience a unique set of
challenges and stressors in their parenting role. Many studies now exist focusing on …

Aims Children with a congenital upper limb difference (CoULD) are a diverse group who
often require multidisciplinary care and long‐term support for functional and social impacts …

The provision of genetic counselling to adolescents with genetic conditions is inherently
complex yet has not been a prominent research focus. In this thesis, I aimed to develop a …

Living with a congenital upper limb difference or an acquired upper limb loss is a complex
and challenging experience. Physical, psychological, social, and economic barriers can …