Background
Methods
Nursing homes in Sweden
Educational intervention and the KUPA project
Sampling and participants
Number | Percent | |
---|---|---|
Age, years | ||
40–49 | 1 | 2.5 |
50–59 | 11 | 27.5 |
60–69 | 18 | 45 |
70–79 | 8 | 20 |
80–89 | 2 | 5 |
Gender | ||
Men | 10 | 25 |
Women | 30 | 75 |
Marital status | ||
Married/living together | 32 | 80 |
Unmarried/divorced | 6 | 15 |
Widower/widow | 2 | 5 |
Relation to the older person | ||
Husband/wife | 7 | 17.5 |
Daughter/son | 31 | 77.5 |
Sibling | 1 | 2.5 |
Other | 1 | 2.5 |
Educational levela | ||
Elementary school | 9 | 25 |
High school | 8 | 22 |
Trade school | 4 | 11 |
University/college | 15 | 42 |
Work status | ||
Full-time | 13 | 32.5 |
Part-time | 9 | 22.5 |
Not working | 18 | 45 |
The frequency of visits to the older person | ||
Every day | 6 | 15 |
Weekly | 31 | 77.5 |
Monthly | 2 | 5 |
Yearly | 1 | 2.5 |
Interviews
Data analysis
Results
Themes | Sub-themes |
---|---|
Orientation to the new life situation | Sense of relief |
Constantly on one’s mind | |
Feeling alone | |
Couples’ different life situations | |
Challenges in the relationship | Enabling good relations |
Relationship marked by a guilty conscience | |
Encountering vulnerability | |
Strained relations | |
The significance of quality of care in the nursing home | Satisfaction and appreciation |
Lack of person-centredness |
Orientation to the new life situation
Sense of relief
Things were very different before. I can tell you it was hard for me, it really was. But now it’s as if I’ve been set free. I think I’ve got a very good life. It gives me a sense of security knowing that Mum’s being looked after at the nursing home. Knowing that the staff are doing all they can to make things better for her makes things better for me as well, much better. I feel calm, safe and secure. I think my life’s good. (Daughter)
I mean, it’s so lovely now to go and see Dad and just sit and talk, have a cup of coffee or go out together, without feeling that there are a lot of things that need doing. No disrespect to the home help service. (Daughter)
Constantly on one’s mind
When I’m on at point of going somewhere, this weekend, for instance, I always think: Oh, just as long as nothing happens while I’m away. (Daughter)
Even though it’s not up for consideration at the moment, I’ve got a brother at home in case anything should go wrong, but... It’s always on my mind, it’s the way I am. I go to the shops because ‘Mum needs new flowers’ or ‘there’s a summer feast tomorrow, perhaps she should have something nice to wear’. So, she’s never out of my thoughts. (Daughter)
Feeling alone
I sit here and doze off in front of the TV, and then, I get angry because he hasn’t woken me up [laughs]. I mean, I think he’s sitting there... (Spouse)
Yes, of course, it’s maybe all right, but I mean, he can’t use the box because it has 20–30 buttons on it. So, he doesn’t get any joy out of the TV any more, and that worries me an awful lot. (Spouse)
The fact that she’s anxious means that I’m more or less assigned the role of the one who gets things done. I try hard not to always take on that role. When I’ve been working all day, after work, I’m a football and indoor bandy trainer for my children. So, in the end, I come home pretty tired. Then, there goes the phone! And it’s my sister who’s worried about something to do with Mum. It’s pretty trying having to go through it all again. So, sometimes, I just don’t answer when she rings. (Daughter)
Couples’ different life situations
You feel it. You sit there and there’s not much going on around you, and you think that now’s your chance. Yes, now’s my chance, and I put all of that out of my mind and find something that’s fun to do. We’ve gone on walks, my sister and I, and it’s great, wonderful, but then, there’s always that awareness that I must go there and see how he’s doing. (Spouse)
Challenges in the relationship
Enabling good relations
You know, it’s about being aware of even the most trivial things that distinguish a human being. It can be whatever shoes are on the person’s feet, for example — this can mean a completely different starting- point for this meeting. It’s about such a little thing as shoes or the colour of a piece of clothing. (Daughter)
Dad’s moved here, from where he grew up, and now, he’s in a nursing home. I’m glad he came here and he’s well looked after, so now I don’t have to go back and forth several times a month to help him with a whole lot of practical things. I’m glad he’s getting help with his practical needs. (Daughter)
So, it just struck me that, no, her brain’s ruined and she doesn’t know any better and that’s the way it is now, and I’ve just got to, well, be a kind daughter to my mother whose brain’s already ruined. I can tell you, I think we’re much, much, much closer to each other now. (Daughter)
Relationship marked by a guilty conscience
It touched me too closely even though I didn’t want it to. That’s the way I felt, and I’d never felt that way before. But it’s been so overwhelming, and then, of course they know anyway. There’s nothing to be ashamed of, but I’ve felt a bit ashamed anyway. I don’t know why… well, yes, because he’s become so ill. (Spouse)
What’s trying isn’t that Mum’s ageing. What’s trying is that she can’t carry on a conversation. Most of the time, when I ask her something, she says ‘Right’. That’s all she can say: ‘Right’. It can sometimes be a bit difficult to ask anything on the weekends when there are so few staff. There should be more staff. (Daughter)
Yes, that’s it. You can sometimes have a guilty conscience because you did not get enough sorted out. Sometimes it’s pretty trying going there because of course she’s old and I’ve heard her stories over and over and over again and, in some way, she’s back in the old days and talks about her dad and all that. (Daughter)
Encountering vulnerability
When Dad isn’t all right, I’m not all right either. He’s much better now than he was a month or so ago, so that makes things a bit calmer anyway. At that time, I went to see him every day and you didn’t really know what was going to happen [laughs a little]. (Daughter)
But Mum’s the sort that, when she’s in low spirits, she just wants to go to sleep and not wake up again, and that can be hard to cope with. She’s always been close to my sister, but now they’re not in touch any more. (Daughter)
I go and see my father on Wednesdays and Saturdays, and then, he tells me what he wants me to get for him. Now, he’s started ringing during the night because he can’t see what time it is. He gets very confused, doesn’t know whether it’s morning, noon or night. It’s been like that for 5 years, which is to say, ever since he came here. (Daughter)
Strained relations
Just because she’s old, she can’t behave any way she wants. I don’t think it gives her the right to have outbursts of anger towards family. (Daughter)
Feelings have come to the surface now that have been in existence for a long, long time. Yes, and then I think, well, when he’d turned 60, I say to myself: ‘I’ve got quite enough on my plate with my own children and grandchildren. I can’t use up all my energy on the older generation’. Yes, that’s a bit how it feels. (Daughter)
The significance of the quality of care in a nursing home
Satisfaction and appreciation
Yes, it gives me a sense of security. Because it’s hard enough anyway, being a mother to your own mother. (Daughter)
Lack of person-centredness
It’s so important that they’ve got nice shoes or something. It doesn’t take much to raise a person’s spirits. (Daughter)
Yes, of course, I’ve seen tendencies in the people who come here, who’ve been pretty hale and hearty but become more and more withdrawn, become silent; it’s very hushed all around. I can tell you, though, that the staff are good, so I must say it’s been better here than I’d expected. (Son)
She doesn’t have to take responsibility for anything, so she doesn’t have to take responsibility for going to bed, she doesn’t have to take responsibility for getting up, she can just exist, so to speak… Before, she had to go and cook coffee for herself, and stuff like that. (Daughter)
Well, I mean, I can’t influence everything. I mean, I’m not there. I live a long way away. (Daughter)
Well, we’ve been anxious and worried about her even though she’s been pretty self-sufficient before. Then, suddenly she’s much, much, much weaker, and of course, we’ve had a few things to say before about their not taking into proper consideration how disabled she is by having such poor sight. (Son)
I’ll be coming with her again tomorrow, of course, because she can’t fix this. I know my mum. I was allowed to take her back to the nursing home, but then she just lay there. That’s how it was, and she just got worse and worse; so yesterday, we had to go to the Emergency again. (Daughter)
I know she’s old and ill in every way, but she still has a right to receive proper care at the end. (Son)