About 500,000 children are coping with life-threatening conditions (LTC) in the United States
every year. Different service programs such as an integrated pediatric palliative care …

CONTEXT: There is little consistency in the use of instruments for measuring self-reported
quality of life (QoL) in young children. OBJECTIVE: To systematically review studies of self …

General Issues in the Care of Children with Chronic Physical Conditions Page 1
Symposium on Chronic Disease in Children General Issues in the Care of Children with …

Objective: Uncovering what it means to be a parent during the extraordinary time of a child's
life-threatening condition (LTC) is important for understanding family goals, decision making …

Background Living with a child with a long‐term condition can result in challenges above
usual parenting because of illness‐specific demands. A critical evaluation of research …

This study examined health-related quality of life and parental stress among pediatric
neuromuscular patients with or without home mechanical ventilation. Parents completed the …

Pediatric practice has changed from the care of acutely, sometimes fatally, ill children to the
care of two major subpopulations. Today, the vast majority of youngsters receive services …

Children with life limiting conditions and their families have complex needs. Evaluations
must consider their views and perspectives to ensure care is relevant, appropriate and …

Objectives Family caregivers of children who depend on medical technology (CMT) provide
highly skilled care up to 24 hours per day. Sleep disruption places family caregivers at risk …

(1) Parents caring for children and adolescents with rare diseases fear the long-term
progression of the child's disease and the loss of their parental role. The aim of this study …