Jo S, Brazil K, Lohfeld L, Willison K. Caregiving at the end of life: perspectives from spousal caregivers and care recipients. Palliat Support Care. 2007;5(1):11-1727
Finding 1	Effectiveness of their caregiver in providing care for them (U)
Illustration	“When I first took sick, I couldn’t do nothing for myself … My wife cleansed me, did everything for me.”(p.13)
Finding 2	Concerned about how the work of caregiving was having a negative toll on their spouses (U)
Illustration	“I worry that she’s working too hard. She looks after me like a baby and it’s just a little too much for her.”(p.13)
Finding 3	All care recipients acknowledged how helpful and supportive formal services have been (U)
Illustration	“I’m so grateful that there are those things in the community that can support us at home.”(p.14)
Finding 4	Continuous care by the same individual (s) was acknowledged by care recipients to be a positive aspect of formal supports (U)
Illustration	“I didn’t have to go from one person to another.”(p.14)
Finding 5	Service workers were not aware of what other service workers had done (U)
Illustration	“Nobody knows what anybody’s doing and you don’t work as a team”(p.14)
Finding 6	The service that they had received was not well coordinated and continuous (U)
Illustration	“They [nurses] write it down but the report in the end doesn’t go to the hospital, and from the hospital the reports doesn’t go to the VON [community nursing agency].”(p.15)
Finding 7	Communication with their health care providers was important (U)
Illustration	“He [the doctor] tells you like it is. He doesn’t sugar coat it and that’s good because you know exactly where you stand.”(p.14)
Finding 8	Lack of communication between the care recipients and health providers was … a major problem (U)
Illustration	“The doctors don’t listen to you. They are more interested in making your body well and it doesn’t matter how sick you feel.”(p.15)
Finding 9	The nurses were insensitive (U)
Illustration	“They told me that I was a cancer patient and I said well the doctor didn’t tell me that … It was, to tell you the truth, quite upsetting.”(p.15)
Finding 10	Difficulties in dealing with the high costs of medical equipment (U)
Illustration	“The cost of being sick is enough to make you sick, it’s the cost of getting well [that] is almost prohibitive.”(p.14)
Finding 11	Caregiving experience had brought them closer to their spouses (U)
Illustration	“We’ve shared a lot of experience just in the last 3 months in this house. I think we’ve come to understand that I’m dying.”(p.14)
Finding 12	Communication … an important constituent of the caregiver–care recipient relationship (U)
Illustration	“We both agreed that we were going to try and see if it worked out. And it has, there’s nothing that we regret having done.”(p.14)
Finding 13	Informal supports had a positive influence on their lives (U)
Illustration	“The people do want to help. They do want to come out and, for my benefit not for theirs.”(p.15)
Finding 14	Recognized the importance of informal supports for their caregivers (U)
Illustration	“She [… neighbour] would tell him things that happened to her and different feelings she had which I think was good for my husband sharing with her.”(p.15)
Finding 15	They had friends, family, and neighbours that they could call upon, even if they did not require it (U)
Illustration	“If I told him that I needed him [… son] he would be here in 5 minutes.”(p.15)
Finding 16	Negative perspectives regarding the presence of informal supports during the caregiving experience (U)
Illustration	“But as you get older you become more lonely … You haven’t as many friends because they’re gone.”(p.15)
Finding 17	Frustration over lack of face-to-face support from her children (U)
Illustration	“They supported me in one way—okay, they phoned—but they never came … I felt that was the hardest part.”(p.15)
Finding 18	Too much support (U)
Illustration	“I had about 29 [visitors] in one day and they had to cut the visitors off because it wasn’t doing me any good.”(p.15)

U, unequivocal.