Family caregiving is a growing phenomenon with the increased prevalence of chronic
illness and shorter hospitalizations. Rare diseases pose significant challenges not only to …

Highlights•Focus groups used to investigate needs of parents of a child with a rare
disease.•Parents felt socially isolated caring for their child with a rare disease.•Often parents …

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 Parent experiences of caring for children with neurodevelopmental disease
have been silenced and constrained by social, political and health influences. There is a …

Background Parents caring for a child with a rare disease report unmet needs, the origins of
which are varied and complex. Few studies have systematically attempted to identify the …

Rationale Previous studies have shown that children may take on higher extents of caring
activities if their parents are affected by severe illness or disability, especially when their …

Background Young carers are children or young people who look after family members who
are ill or have disabilities. They take over similar caregiving responsibilities to those of adult …

Background Parents caring for a child affected by a rare disease have unmet needs, the
origins of which are complex and varied. Our aim was to determine the supportive care …

Background: Communication between parents and their children about parental life-limiting
illness is stressful. Parents want support from health-care professionals; however, the extent …

The explosion of interest in young people as carers over the last decade and a half conceals
the fact that there are still no reliable estimates of the number of young people with …