Table 1.

Brief definitions of key concepts

Concept	Definition
Serious illness	Life threatening medical conditions that are highly likely to cause death in the near future, or medical conditions likely to result in severe disability, medical fragility, or dependency upon medical treatments and technology for survival.
Children	Persons less than 18 years of age, and for the purposes of this paper, also cognitively impaired patients older than 18 years who are seriously ill and unable to make medical decisions for themselves.
Parents	Adults who are the primary medical decision makers for the child, including step-parents, foster parents, grandparents, and other family members.
Goals	Aspirational expectations or hopes for the child’s care or future.
Goal disengagement	Accepting that a goal (or set of goals) is no longer desirable, appropriate, or achievable, and discontinuing efforts to achieve the goal (or set of goals).
Goal reengagement	Adopting a new goal (or set of goals) and initiating efforts to achieve the new goal (or set of goals).
Regoaling	The process over time of disengaging from one set of goals and reengaging or adopting a new goal (or set of goals).
Positive affect	The experience of a general positive mood or specific positive emotions.
Negative affect	The experience of a general negative mood or specific negative emotions.
Hopeful thinking	A sense of being generally successful in achieving personal goals (personal agency) and being able to generate strategies to achieve these goals (pathways).