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Table 6 Ease of understanding and acceptability of the ASCOT-Proxy items

From: Developing a proxy version of the Adult social care outcome toolkit (ASCOT)

Attribute Correct interpretation of item Acceptable to proxy respondent Example quote(s) to illustrate understanding of concepts
Food and drink 25/25 25/25 “I was thinking about the individual that I was thinking of, and thinking about what she eats and what she likes.” [GC_FC_01]
“I feel in my opinion she got all the food and drink that she wanted and I feel she would answer exactly the same.... She couldn’t communicate unless you really did extra work, if you put that extra work in. So around choice when I started working with her it was going out into the community and going round the shop and asking her to point to the things that she would like on her shopping list and then actually forming a list that was hers through all her choices. And then it was about looking at health and what would be good for her health and then it was negotiating – maybe should some of the junk food reduce? So it was over quite a protracted time to get to the stage of finding out exactly what she wanted. So by the end of that process I would say she got anything she wanted when she wanted it… I would say if someone’s communication is really limited to just making verbal sounds actually knowing when they would want a drink or something to eat it’s going to be that close--, very close relationship where the carer actually knows by a certain sound whether they’re actually requesting something.” [JC_FC_03]
Accommodation 22/25a 25/25 “She has her own room, use of a bathroom, she goes to the kitchen, she likes to sit in the conservatory, and listen to her music… she’s got freedom to do what she wants to in comfort, and yeah, it’s warm and clean.” [GC_FC_05]
“They hoover every day. The kitchen is spotless. The bathroom is spotless. The utility room is spotless. It has a toilet that’s all spotless. Everything--, the dining room is spotless. The lounge sometimes because they--, because of the way they are. I mean [Name]‘s fairly tidy but there’s two other residents there and one of them is not particularly tidy. So when you go there and it looks it’s a bit of a mess like, you know, why is it like this? What can the carers do? They can’t be behind that person with a dustpan or hoover all the time, can they? You know, it’s just how things are. So sometimes, no. But by the end of the day -- if you go there in the evening or if I go out late with [Name] and come back late [the other residents] are in bed, that lounge is then spotless.” [SR_IC_02]
Personal comfort and cleanliness 25/25 25/25 “A: It’s not what I feel, it’s how they feel, yeah. And I’m hoping that they feel that they are clean and presentable when they--
Q: And do you get that impression?
A: Yeah, because they’re happy. One of the ladies when she’s got perfume on she’ll giggle and give you that sort of, when you say, “You look lovely,” and you’ve brushed her hair she’ll give you a little giggle and chuckle -- and smile and so you know that she’s quite happy with the way she’s dressed.” [GC_FC_05]
“I’d say less than adequately clean and presentable for us because he needs continual prompts for personal care and clothing. He’s very, very funny with clothing. You’ll never get him in pairs of trousers or jeans or anything like that, tracksuit bottoms and t-shirts all the time. He won’t bath. He won’t shower. He just has a wash, and we don’t know if he’s doing it properly.” [SR_IC_03]
Social participation 25/25 25/25 “Because he’s quite mute, he’s a man of few words, so he doesn’t socialise. He does discos, but he doesn’t have any friends as such. He has his friends and he has his family that contact him. He goes home on a home visit quite a bit but apart from that, that’s about it because he’s not very--, I think he finds it hard to maybe make friends. He’s got a few, obviously on site, where he’s been here years.” [GC_FC_02]
“…because they are in their own little worlds, because they will say hello to people if they--, but they very rarely mix with people, they may go over there to a disco but they’re still in their own little group, so it’s very difficult with people like that because of their autism and their behaviours they feel safe in their own little thing, even though we include them in everything, so they can go out, the cinema, swimming, in the public, go bike riding, they do the clubs here and everything else. But I wouldn’t even say they socialise with each other… I think the one thing we lack is actually still building on relationships, and friendships and things like that, sometimes that’s not just down to us, sometimes that might be due to the care manager cutting hours and they haven’t got that, you know, they’re not paying for social activities. They’re actually paying for care, you know.” [JC_FC_01]
“Not many people come to see her… visitors have stopped. She gets very few visitors apart from family. But her church is at the end of her road and that is very near. She can go there, which she does and takes a friend every Sunday.” [SR_IC_11]
Occupation 25/25 25/25 “I’d say ‘values’ maybe something that is dear to them, maybe it’s a pastime that they enjoy, like something personal that is enjoyable with a friend or family or even by themselves. Enjoys and they do it whole heartedly something that means a lot to them.” [GC_FC_07]
“She’ll sit and watch DVDs, listen to music and dance, sit in the lounge… there is very clear stuff that she really enjoys and that she will go, she’ll be early for that activity.” [GC_FC_01]
“Well she plays computer games in the morning. And it’s a fairly set routine, we have breakfast, she plays on the computer until she gets fed up… until it’s Bargain Hunt or some equally bloody stupid thing on the television [laughs]. And then it’s lunch time, then it’s Neighbours. Then it’s possibly cross stitching until it’s Homes in the Country or something, oh, just some rubbish [laughs]. And I disappear. I can go without the television.” [SR_IC_09]
Control over daily life 25/25 22/25 “He chooses for example what he wears, what time he gets up, what he gets to eat, activities we will try to do two activities a day with him, obviously he will get that choice what he wants to do, I mean as if he wants to ring mum, dad, or whatever, you know, he’s got control of that, so yeah he does have control over a lot of things.” [GC_FC_06]
“It’s like that’s [i.e. not always having full control or choice over daily life] the norm for them, which is not always the best, but at least they’re comfortable and their interests are being addressed.” [GC_FC_07]
“They’re never going to have total control over their life, if I’m thinking of [name], he’s never going to have total control over his life, ‘cause his disability does not allow that, so that shouldn’t be as much control over his--, as he or she wants. It’s the ability, as much as possible, has control over his or her daily life.” [JC_FC_01]
“I say she’s got as much control as she wants. Well she has, because she does what she wants… She’s very happy to let me do all those sort of things [organise financial affairs] because she can’t understand them… It’s sometimes difficult to decide how much I should do and how much we let her try and do. Obviously she wants to do as much as she can, but sometimes it doesn’t happen. But I think she has as much control as she wants to have. I don’t think she wants a lot of control, really.” [SR_IC_11]
Personal safety 25/25 25/25 “I was thinking about how she is and how she will hold onto you and hold onto your hand if she’s out in the community for reassurance and to feel safe and because she’s supported by people who know her.” [GC_FC_01]
“Safe in the house, they can lock the door and it’s, that’s it, you know, because there are a few not nice people around this particular area and it’s, yeah. We’ve never had any problem with anyone and they feel, they know they shut that door and, yeah, that’s it. The outside world’s out there, I’m in here. It’s nice and cosy, yeah. I think so, definitely… they feel safe in themselves”. [SR_FC_03]
“The only time that she doesn’t feel safe is when they’re having to turn her because they’re repositioning her, or washing her. Even when she had a lot more cognitive ability she--, even a simple turn in the bed, −- she would imagine that she’s falling, and she’d say, “Oh be careful, I don’t want to fall,” not realising that she’s in the bed and that the bed’s got supports, that she can’t fall… I noticed last week and the week before she wasn’t really saying that, so I guess she must be feeling quite safe now, you know, so in my opinion and her opinion and I would say--, and we certainly don’t think that she’s not safe, you know?” [SR_IC_04]
Dignity 22/25b 18/25†† “Being respected, making sure you’re not--, you’re fully clothed, stuff like that. Thinks and feels better--, yeah I think being smart, being respected, yeah.” [GC_FC_02]
“The fact that he has the care helps him… he would feel vulnerable, yes. But he knows that ‘so and so is supporting me’, so he’s very comfortable on that.” [JC_FC_02]
“If he wakes up in a wet bed he gets embarrassed. If the staff are very used to him, very experienced staff, then they could get him out of that quite easily. If you’ve got staff that aren’t and, you know, don’t really know how to approach him, then it becomes a big issue.” [SR_IC_01]
“And they [care staff] all treat him in a way that’s going to make him feel better, the way they talk to him.” [SR_IC_02]
  1. Bold: Item modified after round 1 of cognitive interviews (see Table 7 for further details)
  2. aThree proxy respondent included aspects of personal appearance (e.g. washing self) in their evaluation and response to the question; however, once they realised the next question asked specifically about Personal comfort and cleanliness, the respondents reviewed their response to the Accommodation comfort and cleanliness item. Based on this, no revisions were made to this item
  3. bTwo family carers included the effect of unpaid care they provided in their evaluation and response to the question. The question was revised to make it clearer that it refers only to the effect on paid care on how the person thinks and feels about him/herself (see Table 7 for further details)
  4. One proxy respondent (care worker) felt uncomfortable with ‘control’ because it had negative connotations of control over someone. Two proxy respondents (one care worker and one family carer) noted that, as a result of the person’s condition (autism), the person wanted more control than would be realistically possible. As such, they would not be able to answer ‘as much control as s/he wants’
  5. ††One care worker felt that the question may result in care workers answer as they thought the service would want them to, rather than as an honest reflection of their own opinion (proxy-proxy perspective) or their view of the person’s opinion (proxy-patient perspective). One care worker found it difficult to rate the proxy-patient perspective; however, the respondent was not able to articulate why. Three proxy respondents (one care worker, two family carers) said that they found it difficult to rate Dignity from the proxy-patient perspective because of condition-specific considerations related to learning disability and/or autism that meant the person lacked self-awareness and, therefore, did not have the ability to think or feel about themselves. Two respondents found it difficult to answer the question because they person they were representing did not currently receive help or support from paid care staff in any context