Table 1.
Themes Characterizing Supportive Caregiving Relationships
| Agreement about caregiver level of involvement | “Well, [patient] always asks me to be [in the doctor’s visit], and the doctors always ask her first. They ask her first if it is okay. I don’t ask if she doesn’t ask me first.” (#12 caregiver) |
| “That way I can depend on [caregiver]. I don’t have to depend on my own thinking or remembering. She does it.” (#12 patient) | |
| “I try to stay in the background [in doctors’ visits], but if there is something that I’m concerned about, I will ask a question” (#19 caregiver). | |
| “I want [caregiver] to be there to know and to understand what is going on so I don’t misinterpret something” (#19 patient). | |
| Agreement about one another’s competency to perform health-related tasks | “My peripheral vision and my depth perception is shot to hell…. I can’t read the labels, so I have [the pills] in the medicine cabinet in the same place…[Caregiver] knows what the medications are. She has gone to pick up my meds. Sometimes she will come to pick me up and drive me to the pharmacy to fill [the prescriptions].” (#19 patient) |
| “[Patient] still has the cognitive skills. It is just that he does not have the vision.” (#19 caregiver) | |
| “[Caregiver] makes sure that I take this [medication] and this [medication]. Sometimes I will stick the thing in my pocket and I think ‘I’ll take it later’ and then I forget about it or I’m just not in the mood to take a pill right then.” (#17 patient) | |
| “You can’t expect someone who is under this stress, dealing with several illnesses, the death of a daughter, and everything else that gets complicated in your life to be able to sit down and put in the amount of time that it takes to focus on [medication management]. You can’t expect someone to do that.” (#17 caregiver) | |
| Mutual understanding | “She has a much more restricted life…. People will say to me ‘How is your sister?’ And I say ‘Well, if you were asking [patient] that question right now she would tell you she is doing fine under the circumstances.’ By this I mean her life prior to this was entirely different because she was active, and her friends were all in New Hampshire.” (#12 caregiver) |
| “I try to do all the things that I am supposed to do because [caregiver] is making such an effort. She puts so much of an effort to get me on a path. I know that is not easy.” (#12 patient) | |
| Collaborative decision-making and disease management | “We discuss it. [Patient] says this is what is going to happen, and then I say ‘ok’ and then we discuss the situation.” (#11 caregiver) |
| “I have this hip problem, which is killing me. It hurts whether I am standing or sitting or sleeping…. I said ‘I want surgery,’and the doctor said ‘I don’t think so. I really don’t think, medically, you should have surgery,’ so I let it go at that. If he had said ‘Surgery, and yes you should do it’ then I talk to [caregiver] about it. (#11 patient) | |
| “[We] talked about [the surgery] before [patient] went [to the doctor’s visit]. We were driving somewhere, and [patient] said, ‘Okay, if they agree with surgery are you okay with it?” and I said, ‘Yes, as long as you are okay with it.’ And [patient] goes ‘If I don’t live through it I had a good life.’” (#11 caregiver) | |
| “We talk about things. It is not like she is in command or that I am in command. We discuss it. We’re like an old married couple. We discuss it.” (#15 patient) | |
| Use of family and formal caregiving | Family caregiving |
| “She is my sister and she kind of has something to say about what is going to happen to me in the end. I don’t want to give [caregiving] to a stranger.” (#9 patient) “I listen, and he tells me what he needs.” (#9 caregiver) | |
| Formal caregiving | |
| “So now [employing a paid caregiver] we have more of a social relationship than a caregiver relationship, which is nice. We can just go out to lunch or just visit for an hour or whatever and it is not ‘Did you take your medicine? You’re sure?’ because I was being the nag.” (#12 caregiver) | |
| “Now [caregiver] doesn’t have to worry about anything. With the schedule here, there are people who can watch me. Security knows where I am, when I go outside, so she can just go.” (#12 patient) |