Table 5.

Description of themes of caregiver unmet needs

Caregiver Needs	Description
Hope	“We didn’t get enough hope. We didn’t get a glimmer of hope until we came here.”
Practical Advice	A lot more solid information in a small group where it was more applicable to use your own situation.
Home Assessment	have someone do a home assessment when things get to the point where how do you keep track of all these wires It would be really nice to have someone come in and make an assessment and say “This can make it easier.”
Disease Education
Transplant	Why is it so hard to get a lung transplant? What is the reasoning behind it?
Inclusion in care	I think that the pulmonary rehab program leaving the spouse or the caregiver out is a big mistake. I think that there should be a component either include them in that part of the program because they’d say “What are you doing?” “Well, are you going die at home on a tread mill?” “Are you going to lift the weights at home?” “What he’s supposed to do now for maintenance?”
Opportunity to discuss with other caregivers	I think it’s really good to be here without the person with ILD because you can speak honestly. I could never say this stuff.