Table 7.

Theme: Family Caregiving for Patient

Sub-themes	Phase 1: focus groups		Phase 2: recommendations
	AA	White	AA	White
(A) Take care of loved one at home	“And my sister, when she was in Florida and I was bring her home, she said, ‘Now, of anything happens to me, I don't want you to put me in no nursing home. Would you promise …?’ And I promise her. And I took her and she got worse and worse and worse. I took her just like a baby.” “I can remember the day that they released her from the hospital. Her main concern was not to go into a nursing home, and the family did abide by that, and I can remember that day. She'd kinda [leaned] me towards her and said, ‘I want you to go to home with me.’ And that's what I did. I was at her house between six and eight hours a day and once I week I would stay overnight.” “I think really what it boils down to is that you can't say we didn't take care of our loved one. We did. It's the way we was taught. We just take care of one another, so that's what we gotta come back to.”	X	(1)Recognize that members of an AA family take care of their loved ones themselves. It's a core value. (2)Don't bring up nursing homes as an option unless asked or unless patient is already resident of a nursing home, or about to be discharged to a nursing home per hospitalist orders. (3)If loved one is going to a nursing home, provide support to family.	X
(B) Take care of loved one at home no matter what the sacrifices	“It was my responsibility to take care of her. … the funny thing about it is that she got a hospital bed before she really got sick. I slept on an air mattress for 2 years. I own my own business so what happened is she would call me so I came up with the idea, that look, either I have to do my job or my wife, and I let the job go because I wanted to spend as much time as I could with her.” “So my uncle did not have to hear that [arguing about who will care for him]. Like oh, we—it's 6:00, where Jane at? I mean, I was Jane at 1:00, I was Jane at 3:00, I was Jane at 6:00, I was Jane at 8:00, I was Jane at 12:00, I was Jane at 1:00 in the morning. I was Jane. And I don't know, maybe I'm kinda on the crazy side. I didn't see that as a burden. I saw it as when I was a little girl, this man loved me. This man cared for me, and so it was my turn to give back. So he was not a burden to me.” “and I think it's taken us a while to get to where we allow other people to come into our homes and do that because we have always provided the care at all costs, and I don't think we realize that there are people that are trained to do that, so we don't have to be burdened—that we have our own family to get that care and we can take ourselves too. ‘Cause sometimes we're so busy caring for other people that we don't care of ourselves.”	X	(1)Don't raise issue or possibility of home “hospice” (see also section on hospice). Ask which family members are helping with caring for patient at home, and if so, what kind of help they are providing. If it is the kind of care home hospice provides, explain that this is the type of care that home health provides. (2)Stress that home health care is not there to take over. Stress that the family is in charge of making all decisions and determining how things are done. (3)Ask whether there are any concerns about the family providing the care that home health care provides (eg., cleaning a port, or bathing a patient who has an open wound); listen and discuss until all concerns are alleviated. (4)If, after this discussion, patient/family wants home health/hospice, ask whether they want you to recommend referral to this. (5)Stress that all decisions are up to patient/family. Stress that the PC physician is there to help, not to change way family takes care of loved one.	X
(C) Guilt at having a loved one in the nursing home	X	“Well, I went through the guilt thing too because my dad ended up, the last eight months of his life, he was at {nursing facility.] We just couldn't handle him at home anymore.” “So the whole time he was there, we had to pay … we didn't have to, but we paid a private caregiver to go in from 9pm to 6am every day to be with my dad through the night because we knew he was not gonna’ get any attention whatsoever there during the night. I mean, he was, our know, piss poor during the day … excuse my French … but, you know. At least he had some attention during the day. … And it breaks my heart.” “My mother was pretty sick and had to have care all the time and she was terrified of going into a nursing home because she knew that she wouldn't be cared for, and so, you know we struggled with … what to do.”	X	(1)Help family deal with guilt for putting loved one in nursing home.