Background
Formal health care services
Informal care
Consumer participation
Informal caregiver participation in the discharge process
Rationale of the study
Purpose
Methods
Setting and sample
Interview guide preparation and data collection
Data analysis
Coding procedure
Categorization and development of themes
Transcribed text | Code1
| Category | Main theme |
---|---|---|---|
“My mother can’t pick up the phone to inquire about anything these days, so I’m the one who has to take over these tasks that she managed herself earlier. Because I am the only one capable of letting them [the municipality] know when something is not right.” (IC-10) | Being an informal caregiver involves looking after the older relative’s needs | Emerging dependence | Taking an active role |
“It is important that I can act as a spokesperson, because she is not able to herself. [. . .] Being an intermediary sort of lies within the role, I think. It is part of the responsibility of [family members]” (IC-31) | Being an informal caregiver involves being the older relative’s spokesperson | Feelings of responsibility | |
“It’s difficult for them [the home nurses] too, they may communicate our wishes, but their directives are not necessarily supported or acted upon. […] They understand our situation and are attentive towards us, but ultimately they don’t make the decisions.” (IC-10) | The decisions are not made by the home nursing providers | Working with the “gatekeepers” of the health care services | Struggling to gain influence |
“After her breast surgery they wanted to send her home on a Friday. Her surgical wound was still open and it was . . . well, I outright declined. I said: ‘I am leaving town for the weekend, I will not be home if she is discharged’. . .” (IC-19) | You have to be resourceful to be heard | Strategies used when participating on behalf of the care recipient |
Ethical considerations and informed consent
Trustworthiness
Results
Participants
Taking an active role
Emerging dependence and feelings of responsibility
“My mother can’t pick up the phone to inquire about anything these days, so I’m the one who has to take over these tasks that she managed herself earlier. Because I am the only one capable of letting them [the municipality] know when something is not right”. (IC-10)
“It is important that I can act as a spokesperson, because she is not able to herself. […] Being an intermediary sort of lies within the role, I think. It is part of the responsibility of [family members]” (IC-31)
“Of course you feel the pressure, maybe not pressure exactly, but more that it is your duty to do the best you can. And that is part of your responsibilities, so to speak, as long as you have an old kin…” (IC-8)
The complexity of the health care services
“Me, I had, in a way, information about where to turn for help and sort of enquired in places where I could get more information and where I could turn for help and such. (…) It was very clear to me after a while that you have to be well informed as an informal caregiver to be able to make it through. You have to be quite resourceful. (…)” (IC-12)
“The challenge was all the things I didn’t know, things my wife could have received assistance with [from the municipality], but I didn’t know what to ask for (…)” (IC-19)
“You can say that we felt that the informal caregiver sort of needs to be active. No one will seek you out to provide services. No one! Unfortunately, you have to take action yourself”. (IC-12)
“You know, you have to be very strong to make it, actually to be able to follow through with it. Yes, you have to! You can talk… and nothing happens, but we did it. […] They [the municipality] thought everything was fine. Until we put our foot down […]. It all worked out in the end”. (IC-23)
Struggling to gain influence
Working with the “gatekeepers” of the health care services
“Yes, absolutely, I feel that my opinions were heard [by our case worker]. She was a good person, she was very good at following up […] and I do think she did the best she could… But, of course she was no magician! She could only do so much”. (IC-12)
“It’s difficult for them [the home nurses] too. They may communicate our wishes, but their directives are not necessarily supported or acted upon. […] They understand our situation and are attentive toward us, but ultimately they don’t make the decisions”. (IC-10)
“Yes, we had to fight. Because… well actually, I think the communication between the hospital and the municipality was greatly lacking. The hospital was clear on the fact that she had no business being discharged to her home in her condition, but at the nursing home they evaluated her situation differently and thought she was in excellent condition to manage at home with a bit of supervision”. (IC-12)
“Because, you know, I have to stay in their good graces because I am dependent on their help”. (IC-13)
Strategies used when participating on behalf of the older relative
“I feel that it is important to participate, but I feel it is important to participate in a withdrawn way and rather contact the formal services if I discover that something is wrong or that they are neglecting to do certain things. I feel it is better to let them take the responsibility. Then, I can initiate dialogue if things are not working”. (IC-8)
“It all worked out in the end. But it is a pity that you have to go through all this before you are heard…It was terrible. I felt it was degrading that I had to fight with [the municipality]. I cried when I talked to those people, because I felt it was a terrible situation that we had to struggle with… all I wanted was for Mother to be properly cared for in her last years”. (IC-23)
“After her breast surgery they wanted to send her home on a Friday. Her surgical wound was still open and it was… well, I outright declined. I said: “I am leaving town for the weekend, I will not be home if she is discharged”…” (IC-19)
“I simply said “this will not work!” and I removed her keys and everything to prevent them from discharging her and sending her home in a taxi”. (IC-13)