April 6, 2012

Charting the Territory

Charting the Territory: Determining and Documenting Trajectories of Families where a Child has a Life-Threatening Condition

Dr Hal SidenDr Rose Steele, and Dr Stefan J Friedrichsdorf

Little is understood about the trajectory of children diagnosed with progressive life-threatening conditions and their families. Existing research suggests that both positive and negative outcomes may occur within families’ experiences.

This ongoing study aims to understand the trajectory of childhood life-threatening conditions, using a holistic approach that examines the bio-psychosocial-spiritual dimensions within a longitudinal, prospective approach as families move from diagnosis through bereavement.

This knowledge will enable practitioners and policy makers to better understand the realities of families where a child has a progressive life-threatening condition and design appropriate intervention and support strategies.

Please click here for articles resulting from this project

Click here for the Charting the Territory website

Research Highlights:

  • When a child is sick, it impacts on the family (parents and siblings) and the impact may extend over time, from diagnosis through bereavement.
  • Symptoms change over time; it is important for families and clinicians to have more information about how troubling symptoms evolve. This is especially true for rare metabolic, neurological and chromosome conditions, about which we do not know very much.
  • Children with progressive conditions undergo a large number of procedures, take many medications, and are often in hospital, especially intensive care.
  • The trajectory for children, even those with life-threatening conditions referred to palliative care, is difficult to predict.