Table 3.

Hopes and worries of families facing decisions around long-term ventilation for their child as described by directors of pediatric home ventilation programs

	Hope/Worry	No. Who Mentioned (Out of 15)
Hopes	Their child will have the best quality of life possible for as long as possible	10
	Their child will have as normal a life as possible (e.g., live at home, go to school)	8
	Their child will be liberated from LTV	6
	Their child will be cured (i.e., a miracle)	6
	Medical research will find a cure/therapy	6
	Their child will be free from suffering	6
	Their child can maximize his or her potential	4
	Their child will stay out of the hospital	2
	Providers, family, and friends will agree with and support their decision	2
Worries	Will the child be comfortable on and tolerate LTV?	10
	Will they be able to learn everything necessary to care for the child on LTV?	6
	Will they make a mistake that leads to the child’s death?	4
	Is LTV going to work?	3
	How are they going to talk and eat with a tracheostomy?	3
	The child will not be able to leave the home and go out in the community	3
	Stigmatization	2
	Other people will judge them and their decision	2
	The resulting grief if they decline LTV or limit LTV to NIV	2
	Are they “giving up” on the child if they decline LTV or limit LTV to NIV?	2
	Providers will stop treating other things (e.g., discomfort, infections) if they decline LTV or limit LTV to NIV	1
	What will death be like for the child if they decline LTV or limit LTV to NIV?
	How is going to affect their families’ lives?	1
	What is their child going to do when he/she is older and the parents have passed away?	1
	Are they doing the “right” thing?	1
	Are they being selfish?	1

Definition of abbreviations: LTV = long-term ventilation; NIV = noninvasive ventilation.