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Table 7 Modifications based on respondent feedback (questionnaire version 1.0)

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

Item/attribute Rationale for modification
Introduction No modifications.
Food and drink No modifications.
Accommodation comfort and cleanliness Response option (some needs) changed from ‘Not quite clean or comfortable as s/he would like’ to ‘Not quite clean or comfortable enough’ to improve the proxy respondent’s comprehension and ability to distinguish between response options.
Personal cleanliness and comfort Item wording changed from ‘the person I am representing is…’ to ‘the person I am representing feels…’ for consistency with the ASCOT-SCT4 (standard). a
Social participation and involvement Response option (ideal state) changed from ‘As much social contact with people as s/he wants’ to ‘As much social contact as s/he wants with people s/he likes’ to improve acceptability and comprehension.
Response option (no needs) changed from ‘Enough social contact with people. It’s OK’ to ‘Enough social contact with people’ to improve acceptability of the item. (The respondents felt that the ‘It’s OK’ was not needed and sounded too informal).
Occupation Item wording changed from ‘Which of the following statements best describes how the person you represent spends his/her time? This includes anything that s/he does in his/her day-to-day life’ to include at the end ‘that s/he values and enjoys’ to reflect the respondents’ preference for the inclusion of these words. b
Response options (all) changed from referring to what the person ‘wants to do’ to what she ‘values and enjoys’.
Control over daily life No modifications.
Personal safety Item wording changed from ‘the person I am representing is…’ to ‘the person I am representing feels…’ for consistency with the ASCOT-SCT4 (standard). a
Response option (no needs) changed from ‘Safe. It’s ok’ to ‘safe’. (The respondents felt that the ‘It’s OK’ was not needed and sounded too informal).
Response option (ideal state, no needs) changed from ‘very safe’ and ‘safe’ to ‘as safe as s/he wants’ and ‘adequately safe but not as safe as s/he would like’ to improve comprehension, the proxy respondent’s understanding and ability to distinguish between response options.
Dignity Item format changed to bold and italicise ‘paid carers’.
Item wording changed from ‘Because of the care s/he receives…’ to ‘Because of the paid care s/he receives…’ to improve comprehension that the question relates only to the effect of paid care.
  1. aThe Personal cleanliness and comfort and Personal safety items were amended to reflect the concept of ‘feeling’, rather than ‘being’, clean and presentable or safe. This was based on finding that the respondents in the first round of interviews were intuitively reflecting on how the person they were representing feels and thinks (i.e. from a subjective perspective) when answering from the proxy-patient perspective (for example, “He will hold your hand when you’re on the street because he feels safe doing that… he knows he’s safe in the house. He knows that we’ll protect him, under no circumstance will he ever get hurt.” [JC_FC_01]
  2. bIn the first round of interviews, the proxy respondents were asked to look at both item wordings and to say which they preferred, and also why. Four of the six respondents in the first round of cognitive interviews stated a preference for the inclusion of ‘that s/he values and enjoys’: for example, “that’s much better. That’s a much better question… I think that’s worded better… because it’s talking about her values and her enjoyment. It’s not what you want to do, it’s what--, it’s another way of wording what you want to do. But actually when we’re looking at the people we support we’re looking at their values and what they like to do and their likes and dislikes and everything so I just think it’s easier to answer.” [GC_FC_01]. One respondent did not specify a preference. The sixth respondent expressed a qualified preference for the inclusion of ‘that s/he values and enjoys’: “I like the word enjoy, because when people have got that lesser communication and they can’t do it, we put activities on what they enjoy. We can evidence that through behaviours and smiley faces and things like that, so I do like the word enjoys… but I’d just put and enjoys (not values).” [JC_FC_01]