Grant: Network Catalyst - Institute of Cancer Research (ICR)

Children with life-threatening conditions, and their families, require specialized care to enhance their quality of life. Many of these diseases are progressive, and little can be done to stop or slow the disease. Life-threatening conditions typically result in death before adulthood. Prevention and relief of physical symptoms, as well as emotional, social, and spiritual difficulties, needs to begin early on. While fortunately the number of children with such diseases is small, the impact is very large because a sick child affects parents, siblings, friends, community, and the health professionals caring for the child. Starting in 2004 the Canadian PedPalNet was the first ever research network to study these children and families with an emphasis on comfort and quality of life. Now the continuation of the team as PedPalASCNet (Accessible, Sustainable and Collaborative) means that there are more researchers and clinicians working together. They unite across the country with a common goal: create knowledge and evidence so children with life-threatening conditions and their families get the best care possible. A national network will form the basis for future studies, to determine which treatments and interventions are most effective in strengthening positive outcomes and reducing negative outcomes of living with and caring for a child with a life threatening condition, from diagnosis through bereavement. We will also establish new foundations for collaboration with other research teams and with families, taking advantage of new social media, so that questions and results flow rapidly in both directions. By working with clinical centres, academic institutions and collaborators our goal is to eventually improve the experiences of children, families, caregivers, and health care professionals from diagnosis of a life-threatening condition through to bereavement.