Table 2 Adaptations to PERSONABLE after analysing focus group data

Waking to work exercise - Refining the key purpose to exploring the utility of resident ‘choice’.

Initially designed to address resident choice and community diversity. All groups commented that the exercise did not make them think about community diversity ‘it highlighted more about choice but not what you said about the community’ and ‘it’s more about choice than (the community)’. Staff readily understood the need for resident choice ‘loads of choices that we can make every day and take for granted’, but not necessarily as a platform for considering the underlying citizenship of being assisted to make autonomous decisions; therefore, this was added as a teaching point to the final version of PERSONABLE.

Exercises two and three: Personhood - Following focus group feedback, the personhood domain relating to ‘neurological impairment’ changed to ‘How I learn’.

Consensus from all groups that ‘neurological impairment’ implies disablement. All groups felt any replacement term should not be medical so that a person with limited experience might understand and utilise the term, when the focus group facilitator asked, ‘would you understand the term cognitive function?’, one participant replied, ‘a lay person wouldn’t’. One family member suggested ‘my learning style’, which led to discussion exploring the positive utility of viewing the person with dementia as having the capacity to learn ‘are you really trying to find out how they absorb information?’. There was consensus that ‘how I learn’ possessed a powerful mechanism to convey the principles of personhood and citizenship.

Exercises two and three: Personhood - Replacement term for central circle of personhood model denoting ‘staff’ and ‘resident’. The terms ‘staff’ and ‘resident’ replaced with one term ‘who am I?’ for both exercises.

Staff broadly expressed terms in exercises two and three should be consistent for staff and the resident. A participant in focus group two implied they perceived the assessment of personhood as the same regardless of whether the person has dementia or not ‘I probably looked at this and thought of myself before I thought of anyone with dementia’. A participant in group one also commented that ‘you shouldn’t really talk to people who have got dementia any different than somebody who hasn’t got dementia’. When reviewing these data, the research team concluded that the central circle should have the unifying phrase ‘who am I?’ for both staff and residents.

Outside to inside exercise - Simplifying language to emphasise key concepts.

After observing that participants spent much of the focus group reading text related to the original exercises, it was agreed that minimal text should be included on the revised PERSONABLE worksheets, with the aim of improving staff engagement with the reflective discussions.

The Pledge - More detail added to the pledge instruction.

After the focus groups concluded, the wording of the pledge was changed from the simple statement ‘For the next 30 days I will’ to ‘Within the next 30 days I will change one thing about the way I work that may improve my understanding of a resident who has dementia. Or I might introduce something from the outside community into the care home’. This decision was based on feedback in the focused discussion groups that some staff might have difficulty thinking of a pledge ‘if they can’t see it, just a few examples and they may come up with’ and ‘if there’s examples there, you can sort of say ‘I see where that’s coming from’ and maybe something new’. The text was adjusted to provide more guidance and some non-specific, and general, examples were provided.