Written by Hal Siden
RESEARCH PROJECT: Charting the Territory
Lead investigators/designated PI’s
Hal Siden and Rose Steele
Data collection done, analysis continues
March 3, 2009
Children living with severe life-threatening conditions and their families require specialized care to enhance their quality of life. Prevention and relief of physical symptoms, as well as emotional, social, and spiritual difficulties, needs to begin at diagnosis because little can be done to stop or slow these diseases, which typically result in death before adulthood. We know that while the number of children affected by such conditions is relatively small, the impact is extensive as a child’s life and death affect parents, siblings, extended family, peers, community, and the health professionals who care for the child.
New knowledge obtained from this study will be very helpful to families because it will offer information about the child’s disease which they can use in decision-making about their child’s care and in advocating for required resources. Currently, they have no such information and are ‘navigating uncharted territory.’ This proposed study will develop the map they need to help them through the illness experience. The study also will assist health professionals to provide families with information on what to expect as their child’s illness progresses and how to make the most of their child’s shortened lifetime. Further, interventions that may be helpful to families can be identified and then form the basis for future studies to determine which treatments are most effective to strengthen the positive and reduce the negative impact of living with and caring for a child with a life threatening condition, from diagnosis through bereavement.
The purpose of this study is to identify and follow approximately 300 children with these conditions, and their families, from across Canada to determine and document how the child’s condition affects them physically and the associated emotional, social, physical, and spiritual experiences of the family over time.