BACKGROUND: The role of psycho-educational interventions in facilitating adaptation to chronic disease has received growing recognition and is in keeping with policy developments advocating greater involvement of patients in their own care. The…
OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to…
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into…
This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive…
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…
BACKGROUND: Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The…
