Table 1.

Thematic framework and selected quotes

Domains	Themes	Selected Quotes
Information	Benefits for child	“Also, the kid can have a life. I have kids who are on 24/7 and still go to school. You can have some semblance of a normal life, though it’s not normal, per se.”
		“I think it does, for many kids, help them stay out of the hospital or out of the ICU or out of a chronic care facility, if it’s working. I think it does make kids feel better, again if they’re tolerating it...I think if the child feels better, then that is happier for the family, and the parents are happy with that and they like that if it manages to help keep the child out of the hospital, that’s a pro for the family”
	Benefits for family	“The benefits of the family I think really come down to, for the most part, them feeling that they love their children, want them alive, and are doing everything they can to make that happen.”
		“They look at life in a completely different perspective because they are doing something that is very tangible to improve the quality of life of their child. For some, it actually brings some positive rewards in a way, because there is a task, there are some results, and in a way, they need their child’s presence to have a meaning in life.”
	Risks/burdens for child	“I do think some of the worst ones are the stigma associated with it.”
		Invasive ventilation: “The con is there’s all the issues associated with a tracheostomy.”
		NIV: “We’ve seen kids who have had very significant skin problems and midface hypoplasia.”
	Burdens for family	“I think one of the things is actually impressing upon the family the responsibilities and level of invasiveness and responsibility that comes with caring for a child with both invasive and noninvasive ventilation at home. And I think if families are appropriately counseled about that, we help to better support them and make sure this is really something that they want for their child and for themselves and for their family.”
		“It’s an extraordinary difficult and burdensome thing for families, they don’t complain about it, but it is an extraordinary experience that is unlike almost any other situation”
		“We do portray a significant part of what they’re going to have to deal with as significant burdens on the family, potential for family disruption, certainly altering lifestyles. And we want make sure that they understand that this is not easy, not simple, and they’re making a decision that’s probably gonna affect their family for the rest of everybody’s lives.”
		NIV: “I think we view noninvasive ventilatory support as not as big a step, or as resource consumptive, or as emotionally draining as vent and trachs. We tend to treat it that way.”
	External sources of information/support	“I do caution them to if they have questions, and if they have concerns about what they read on the internet, let’s talk about it. And I can explain how that does apply to them, or doesn’t apply to them. And so that we can at least talk about they’re reading.”
		“I think always the most invaluable thing is actually letting the family talk to another family who already live with a child with similar technology and maybe has a similar medical condition, because I find they get sort of that real life perspective from another family that we can’t provide as a clinician to them.”
Decision-making process	Setting the stage for decision-making	“I think just letting the family talk and addressing their questions always brings up these larger issues to help make sure they’re really getting what they need when they’re making these decisions.”
		“I think it’s very important to have the Vent Team involved, because many times a primary team, if they don’t do this on a regular basis or as an outpatient, they may not know all the aspects of care and what this means at home.”
		“But I’ve come to the conclusion that to try and use euphemisms and try and avoid discussing topics really isn’t helpful. And while families may be upset at the moment, in general, they’re thankful that we were as honest as we could be with them.”
	Hopes and worries of families	“I think every family wants their child to be as healthy as possible for as long as possible. And some families are quite realistic about it, and others are incredibly unrealistic about it.”
		“I think that the prospects for research now are greatly altering people’s decision-making, because they have a lot more hope for things that are on the horizon.”
	Barriers to decision-making	“I think the biggest hindrance is lack of information”
	Providers’ opinions on best choice	“I think for the families, knowing that there is no right or wrong answer, that the answer is unique to their situation, and making them feel comfortable with whatever decision they choose. And not bringing my own, if I have my own personal opinion, I never let that be known. And families ask me what do I think, and I try as best as I possibly can, to not put my own personal opinion into it and just lay it out medically.”
		“I always felt that well, we shouldn’t ventilate everyone because we could. And I think that the mindset has changed now that I’m seeing that, from an administrative standpoint, that if a family wants to do this, that you were obligated to do this no matter what you think is ethically appropriate. And so I’m struggling with this too, because I’ve been evolving over the past 30 yr on what is appropriate, and what is not appropriate.”
		“Doing everything we can to not put unrealistic burdens on families, such as saying, ‘Do you want us to do this or not or just let your child die?” You can word it in a way to really make families have a heavy burden to carry regardless of the choice made, and so I think shared decision-making sometimes involves a degree of paternalism that we are slow to make in our current medical culture, but that paternalism can remove a burden of guilt from a family, and yet, how to do that while respecting their autonomy is not always black and white.”
		“We tend to provide our opinion by just conveying what’s the likelihood of success or failure, or improvement or no improvement.”
Special populations	Cognitively intact older children	“If the child has the capacity to be part of this [decision-making]...then I’d say that [their participation is] an absolute”
	Children who are profoundly cognitively impaired or have very poor prognosis	“I have a lot of profoundly neurologically devastated children with tracheostomies, and it’s always for the family, it’s not for the child. The family feels that they’re not ready for their child to die, and I’m not ready to take that away from them. So I have a lot of patients who are neurologically devastated with tracheotomies and ventilators, and they go along for years like that, and it brings their family joy, so that’s what we do.”
	Young children on NIV	“Some [young children] just never seem to get to the point where they seemed comfortable or rested with [NIV].”
	Children fully dependent on NIV	“To some extent, if you’ve got a progressive disorder, if they said they only wanted to do noninvasive ventilation, you’re really talking about some degree of ‘accept natural death’ or ‘do not resuscitate’ stance.”
		“I often try to suggest to them that, actually, those on noninvasive support who are truly dependent may be less safe than those with a tracheostomy. Although it’s noninvasive, as a result it’s also probably less stable.”

Definition of abbreviations: ICU = intensive care unit; NIV = noninvasive ventilation.