Themes | Codes | Examples of quotations |
---|---|---|
Determining the seriousness and acceptability of risks | Consideration of the person's abilities and past habits | In the kitchen, everything that was automatic, she washed it all, cleaned it all, everything. It's easy to do automatically, so I think that with a routine, at home […], the risks will be less. (OT-hospital, Case 2, T1) |
Perceived fit between the person's needs and the support in place | I found that the risks are still… limited, in the sense that her son is quite mobilized, and she seems to be… relatively in a routine. […] She also seems to automatically call her son or her friend when there's a problem. So I thought they [the risks] were minor. (OT-community, Case 2, T2) | |
Consistency with the person's values and benefits for well-being and maintenance of a positive identity | Her two sisters, they told me she would prefer to manage the risk rather than live in a glass bubble. They believe that freedom is more valuable than security. I think that in this sense, staying in her home makes sense. (OT-community, Case 7, T2) | |
Probability of serious adverse events makes the risk unacceptable. | But I just want to say that when you found someone like that once [on the floor, unconscious], after that, security becomes a priority. (Caregiver, Case 7, T1) | |
Increase in the unacceptability of risk when judgment is affected | His refusals would be based more on: “I don’t need it, I can still do it.” […] The fact is he doesn’t see, he doesn’t realize it. […] He thinks he doesn’t have any cognitive problems so he doesn’t accept the diagnosis. […] In his mind, it's not a true diagnosis. (OT-hospital, Case 1, T1) | |
Reflecting on ways to manage risks | Prior experiences, such as wish to avoid having strangers in their home, make families reluctant to accept services. | And I don’t see myself having a stranger in the house, you know what’d happen… I’d be so embarrassed, I wouldn’t know what to do with someone. (Caregiver, Case 1, T3) |
Importance of considering how the person feels and giving them time to accept and feel the need | We are letting things happen so he can make his decision when he's ready… He must feel unable to meet his own needs. They will offer him a place in a residential long-term care center (CHSLD). In any case, it must come from him. (Caregiver, Case 8, T3) | |
Taking steps to manage risks | Strategies are based on changing behaviors, modifying how things are done, or adapting to the environment. | We take precautions to avoid falling. [INTERVIEWER: So, your precautions, do you know what they are?] It's how to walk. [So you walk slower?] Yep. (Patient, Case 7, T3) |
At one point, I thought the stairs were going to be a problem but not at all. Well, I say “not at all” but, you know, she has to hold on, she holds on very well but she has to hold on. (Caregiver, Case 7, T3) | ||
No, she didn’t fall again. No. [INTERVIEWER: Okay. There was a big improvement anyway.] Yes. Yes, anyway. [INTERVIEWER: How do you explain this improvement?] I think she uses her walker more. I think she takes less chances. (Caregiver, Case 4, T3) | ||
Some tend to avoid stressful situations, for example, by giving up risky activities. | I’ll tell you: I had my car and when I gave it up, it was me who gave it up. I was driving along and I said: “Where am I going?” I pulled over near the sidewalk and thought about it, and then, I found it. So I knew inside that it had happened, that it was time to stop driving. I stopped […] because I said, I could hit someone and I could kill myself. (Patient, Case 4, T1) | |
Caregivers rely on healthcare providers to understand the causes of MNCD and the diagnosis, or to decide what steps to take to resolve conflicts and access services. | As for his driver's license, the children didn’t really agree that he should have it. They would have liked him to give it up. That annoyed him so we didn’t push it. I said to myself: “Let them [the doctors] do that—they’ll see him over there [at the hospital]. […] I spoke to the doctor about it. Then I spoke to Dr S [otorhinolaryngologist] […] And… afterwards I spoke to the cardiologist, and all three said he was okay to drive.” (Caregiver, Case 1, T3) | |
Relocation is the last option to consider. | We are quite clear that if her place is here [in her own home] and that's what she wants, we’ll do everything to ensure she stays here, you understand? We’ll do everything. (Caregiver, Case 7, T3) | |
Dealing with uncertainty over time | Risk situation is often perceived as unstable, fluctuating from day to day. Its causes and evolution are difficult to determine. | I saw a big improvement since she left the hospital because she wants to stay at home, she can reason and she has a fantastic memory. […] In any case, I look forward to them doing another assessment because maybe it’ll be more precise what she is suffering from. (Caregiver, Case 7, T2) But she is surprising because some days like… when I’m not there, I come back and […] I find out that she went to the post office. (Caregiver, Case 7, T3) |
Patients and caregivers may anticipate adverse events but remain uncertain about the evolution of cognitive or physical impairments and the ability to stay at home. | At the hospital, they didn’t want to let her leave because her diabetes wasn’t stabilized and all that. I returned to look after her for two weeks and that's when they said: “Okay, we’ll let her leave.” (Caregiver, Case 9, T1) I think she came back like before […] but she was more fragile. […] She's not worried but she's more careful because she says: “I don’t want to go back to the hospital.” […] She is in the process of regaining her strength and resuming her little routine. (Caregiver, Case 9, T2) That doesn’t concern me at all. I say to myself: she can fall again like we all can. She is careful, she is more fragile, however. It doesn’t concern me because the CLSC carefully monitors […] her diabetes. That's what had caused her fall, low blood sugar. […] She doesn’t have them anymore [dips in her sugar level]. (Caregiver, Case 9, T3) | |
Dealing with new relationship issues: Maintaining integrity despite dependence | Growing dependence after discharge creates the need to review the roles of family members towards each other. | So (…) he [Patient 1] says to the children: “I’d like you to say why you don’t want me to babysit your kids, and that I can look after your kids.” Okay… so the children made him understand, with sensitivity, that he's deaf, he can’t hear… and he doesn’t walk! So if one of the kids falls, how will he manage to go… you know (Caregiver, Case 1, T3) |
Challenge for patients to preserve their autonomy and self-esteem when faced with the need for increased assistance | When I was a girl, I organized things without help and I helped other people a lot. I helped but I had difficulty letting people help me. I’m now starting [to accept help]. […] Because I can see that my health is declining. (Patient, Case 4, T1) | |
Caregivers feel more responsible for patients’ well-being and safety as their cognitive health declines. | I told her [Patient 7]: “As soon as I realize—I will go there regularly [to see her at home]—that your safety is or may be jeopardized, we will review our decision [concerning staying at home].” I was very frank. I have her mandate and I feel responsible in that regard. (Caregiver, Case 7, T1) | |
Risk of caregivers’ burnout due to constant monitoring of risks affecting their loved one | So we [caregiver and his sister], we are overtaxed. We say: “We can’t do it any more.” We can’t do more than we’re doing, we don’t want to do more than we’re doing. (Caregiver, Case 8, T2) | |
Conflict with life plans | I spent my life working […] I’ll go and see my mother. I really love my mother… But I can’t be there 100% and ruin my retirement… (Caregiver, Case 2, T1) | |
Tensions between family members caused by differing opinions | If it was too risky, I’d see it… […]. You know, it's like I told you, the children are exaggerating because… Me and him [Patient 1], we don’t see anything… complicated, you know. (Caregiver, Case 1, T3) | |
After I confronted him with his situation […] he started to consider me one of the bad guys. (Caregiver, Case 8, T3) | ||
Potential for developing a harmonious partnership | It's lucky he's here [her son living with her]. I rely on him. […] There aren’t too many risks because he thinks about them [medications]. […] It's good for him too, being here. He doesn’t pay any rent, nothing. (Patient, Case 3, T2) | |
We agreed [main caregiver and her sister]. I said: “Me, [sister's name], I’ll be there when you’re not there, and we’ll get organized.” (Caregiver, Case 7, T2) | ||
Caregivers’ and healthcare providers’ dilemma of prioritizing protection over self-determination | Sure, he always does what he wants. We want him to have some autonomy, so we put him in a situation where he is supposed to be autonomous. […] But I notice that he has a lot less autonomy than he says. (Caregiver, Case 8, T2) | |
There was a series of… things [adverse events] so, should I be concerned? About the decisions he makes, because he can be impulsive and it's not adapted. […] He can't see himself going. (Caregiver, Case 8, T3) |
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A case study protocol outlines the procedures and general rules to be followed during the case study. This includes the data collection methods to be used, the sources of data, and the procedures for analysis. Having a detailed case study protocol ensures consistency and reliability in the study.
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