Decision Making in Serious Pediatric Illness (DSPI)

• Parents' reprioritized goals [ Time Frame: up to 2 years ] [ Designated as safety issue: No ]
  Parents, when interviewed every 4 months for up to 2 years, are asked what the goals of care are for their child, and if the priority of those goals has changed.
  
  

• Parents' self-defined 'good parent' attributes [ Time Frame: up to 2 years ] [ Designated as safety issue: No ]
  Parents, when interviewed every 4 months for up to 2 years, are asked how they assess their achievement of attributes of being a good parent to their ill child
  
  

Parents making medical decisions for a child living with a life-threatening condition confront, sometimes repeatedly, an extremely daunting task: how to decide when to set aside the therapeutic goal of cure or of life prolongation and instead prioritize the goals of comfort or quality of life.

This study will look at a cohort of parents whose children are confronting life-threatening illnesses in intensive care, palliative care, and complex care settings, to test whether parents with higher levels of hopeful patterns of thinking are subsequently more likely a) to change the "level of care" order status of their child (as an important and demonstrable example of adapting goals); b) to reprioritize goals for the child when they are reassessed regarding goals ; and c) to report a higher degree of achieving self-defined 'good parent' attributes.

We hypothesize that parents with higher levels of hopeful patterns of thinking subsequently will be:

More likely to enact a limit of intervention order. More likely, upon explicit formal reassessment, to reprioritize goals for the child.

More likely to report a higher degree of achieving self-defined 'good parent' attributes.