Parents caring for children with rare diseases fear the long-term progression of the child's
disease. The current study aims to systematically investigate the quality of life (QoL) in …

This study examines the various ways that artificial intelligence (AI) is being used into the
field of cancer medicine, with an emphasis on innovative techniques and advances in …

Rare genetic disorders (RDs), characterized by their low prevalence and diagnostic
complexities, present significant challenges to healthcare systems. This article explores the …

Descriptive title Parents of children with rare diseases face pervasive challenges in meeting
medical and social care needs. Existing research on the parents' experience of caring for a …

Background Currently, information on factors associated with anxiety in family caregivers of
children with chronic diseases is unavailable, indicating a significant gap in the literature …

The main objective of this study was to analyse the experience of grief and feelings of loss in
family caregivers of children diagnosed with autism spectrum disorder (ASD), as well as the …

BACKGROUND: Mothers of children with a range of developmental disabilities report higher
levels of stress than mothers of typically developing children. Higher levels of stress can also …

As rare diseases often have an onset of symptoms in childhood, the burden of the disease
and associated challenges commonly fall to the individual's family members. Managing this …

Living with a childhood chronic disease can be challenging, especially if the diagnosis
involves a rare condition. This study sought to elucidate how the diagnosis of a rare disease …

Purpose The aim of this study was to develop a substantive theory that explains parenting
stress among mothers of deaf or hard-of-hearing (D/HH) children. Method Fifteen hearing …