Background
Methods
Research aim
Design
Method Sampling
Recruitment of participants
Data collection
Interview guide
● Do you discuss cognitive impairment with your patients? |
● How would you describe dementia appropriate care/ cognitively aware chronic disease management? |
● Is there value acknowledging dementia in care planning? |
● Whose role is the recognition and management of dementia? |
● What would be helpful in supporting you in dementia care provision? |
● What prevents you providing dementia care? |
Focus group duration
Group dynamics
Data analysis
Trustworthiness
Patient and public involvement
Results
Participants
Characteristic | N (%) |
---|---|
Age range (years) | |
20–29 | 2 (6%) |
30–39 | 4 (11%) |
40–49 | 5 (14%) |
50–59 | 17 (47%) |
60–69 | 8 (22%) |
Gender | |
Male | 1 (3%) |
Female | 35 (97%) |
Qualification | |
Registered Nurse | 30 (83%) |
Enrolled Nurse | 4 (11%) |
Years of practice as PN | |
Less than 1 | 5 (15%) |
1–2 | 1 (3%) |
2–5 | 6 (18%) |
5-10 | 6 (18%) |
> 10 | 16 (45%) |
Chronic disease management part of role | |
Yes | 31 (86%) |
No | 5 (14%) |
Self-reported completion of any type of dementia training in addition to the education provided prior to the focus group | |
Yes | 24 (67%) |
No | 12 (33%) |
Thematic findings
Theme 1 Personal attributes of the PN
Knowing the person
“You’ve got this husband and wife coming in, and you know they’re falling apart because you see them all the time. She’s coming in all dishevelled.” (FG3)“if they're doing something and then something changes, as in they used to be able to do it and then they couldn't do it … so I'm noticing this is going on today, how is everything? You don't seem yourself” (FG8)
“there's a trust comes between you and the patient. They feel very threatened by families saying, mum, you're getting dementia. But you can - a nurse, the nurse can suggest little things and they don't feel as threatened” (FG6)
“But by gaining that therapeutic trust building up, that relationship with them. Having that extra time to listen to them ramble on a little bit. That's where we're probably going to get a better picture. Also having that little bit of extra time with them allows us visually to see how they behave, how they interact. How their thought processes work instead of just perhaps putting them on the spot in that brief GP type setting”(FG1)“the GPs feel that their relationship can be threatened if they broach the subject …we have the gift of time … we can actually build rapport with the patient and speak to them”(FG2)
Overcoming stigma
“if we’re all just having it [the conversation with] everybody… you know it becomes more normal…It’s a bit like depression; once upon a time, nobody talked about it. Well most people are happy to talk about it now that it’s not as scary. Whereas dementia is still pretty scary”(FG5)
Theme 2 Professional attributes of the PN role
Caring holistically
“when I first started nursing it was very task orientated. You told the patient what to do and they were expected to do it. But now the push is for the holistic view. So you’re looking at not just the disease, you’re looking at them as a person and their whole lifestyle. So even if you’re not thinking cognitively, if you are thinking of the holistic patient, the cognitive stuff starts popping up”(FG3)
“I haven't probably pushed enough in that cognitive sort of side of things. I'm really concentrating on the physical, you know, medical things”(FG8)
“All our care plans are based around musculoskeletal, cardiovascular or diabetes. I don't think I'd do it separately, I'd incorporate it into everything else”(FG7)
“it’s such a big topic it could be - it could be a care plan or whatever on its own… Is there an actual assessment you can do separately?”(FG2)
“they are coming for generally a specific thing like diabetes or something like that. So, you do - you touch on their mood and that sort of stuff. Sometimes it can just be hard to move over to… When you’ve got so many other things you’ve got to look at”(FG2)
“Sometimes time constraints would stop you. You haven’t got time to… sit with them and go through all the cognitive stuff”(FG4)
“We need a follow-up to see what changes have occurred and then we need to plan care, support and carer support appropriately”(FG2)
“It doesn't matter where the cognition impairment comes, whether it's early in the cardiac disease, or late in the cardiac disease, we've got to…because it's combined as part of the same person, we've got to deal with it very early and make sure that we look after people early on(FG6)
“I just think it’s a huge area that’s lacking and I think we can do a lot as a practice nurse…we’re seeing those patients coming with high blood pressure, high blood sugar, but why? Why are they missing the medication, why aren’t they - you know that sort of thing”(FG3)
“It isn't all just about facts and figures. It's not about the one disease or the one comorbidity, it's the whole lot impacting on each other … you can't isolate one disease from the other. You've got to - if someone's got dementia and diabetes, for example, you can't just treat the diabetes without having stuff in place for the dementia and likewise”(FG7)
Knowing what to do
“I think we're recognising there is an increasing need of recognition because it's - a thing. It is a growing - it's increasing”(FG6)
“I’m just wondering what, as a nurse… what can we do? Is it just referring on? Or is there stuff that we can do of value? … What is our role other than keeping an eye on them?(FG2)
“but I don’t know what to do with these people. The poor carer comes in and they’re nearly crying and pulling their hair out … but you still feel that you [are] useless because you don’t know what to do for them”(FG2)
“we're jack of all trades and masters of none? Like you're not really focussing on one - you might go from that, to doing a four-year-old immunisation and wound care, to, you know”(FG6)
“I don’t think that we should be in the role to say, yes I think you’ve got a problem with your memory”(FG2)
“Yeah, when I do a care plan before I even get the patient in, I’ll sort of look at their problem list and I’ll sort of work out in my head some goals related to each problem that they’ve got. So then if it did have dementia there, I could think of something to do with dementia”(FG5)
[Asking about cognition] “Particularly in the health assessments… I was going to say, not during a care plan. Yeah, definitely in a health assessment” because it’s listed on the template “You’ve sort of got that prompt to fill in”(FG4)
“you're doing a spirometry say and things weren't just making sense and it was really hard to get them to understand... you might be able to say, so, it seems like you're finding this a bit challenging. What's difficult here? You could probably start a conversation there that might lead you to have some suspicion that you may then raise with the GP”(FG8)
“that’d be my first port of call would be actually to get a CDAMS assessment because … Have they got dementia or not … Yep, I think that’s the first port of call…When they’ve had that CDAMS assessment, come back and see me… When we get an outcome from that then there should be some recommendations or I would think from the CDAMS assessment... Yeah, well they [CDAMS] can refer or [I’m assuming] that they may have some case workers or something that they refer onto to make sure that sort of starts there…you can refer them onto a case worker that can get all those ducks in a row for them” (FG2)
“Well, I mean you would sort of…like your wording; make sure that its simple things I think you mostly would need to do; things that they would understand, yeah”(FG5)
“the nurse reassuring the patient and the carer that there is help and we’ll refer you onto somebody that we feel can help you”(FG2)“Getting them connected with services in the community, be it home help, Meals on Wheels, social groups”(FG7)
“planning really early and what plans have you got in place? How can we give them clues to deal with all of those things early on”(FG6)
“finding out who their social supports are and working out - seeing if they’ll engage and assist with the care”(FG2)
“you want to be able to maintain the carer, carer’s role and help support relationships there where you possibly can as well, because they’re - we all know what sort of stress these people are under and their families”(FG2)
“The prompting in the care plan itself, in the template. Like we have your height, your weight, let's put a cognitive assessment … Just to make you go, oh have I picked up anything while we've been discussing something…that doesn't quite make sense”(FG7)“They can keep you focussed, a template, I reckon”(FG6)“I think it’s a very sensitive subject… So, to actually have a list of questions that you could ask I think would be handy to - the language, the words, correct terminology, the words that you use - it’s not going to be threatening to them”(FG2)
“Just this sequencing of the progression of the condition, at what point do we … we need some sort of stage plan when we know when things get to this situation we need to refer onto so and so or we need to revisit that or where do we go to from here?”(FG2)
Theme 3 The context of practice
Team Culture
“I’ve worked with both extremes. You get the ones that are trusted and value their practice nurses…they read everything you write in the care plan and take it on board, to the other end of the spectrum…There’s still a few [GPs] around who think you’re a hand maiden…It’s how they value the team…Can you drag a GP across and go, I’m worried about Mr so and so, I’m a bit worried about his memory, its deteriorating. If the GP - if you’ve got a good team they’ll go, oh I’ll look into that the next time I see him” (FG3)
“The thing is, we've got - we're limited to what we can do. We can suggest things, but we've sort of - you've got to bring it to the GP’s attention sort of thing if it's a patient. It's - we can't just go ahead and order things like that. It's got to come from the GP, so we're sort of…We can plant the seed, we plant the seed pretty much and say, you know, we're just a bit concerned about this patient such-and-such, or whatever, and then they – whatever”(FG6)
“It can be just people who see them regularly can be the first ones that pick up when things are wrong…I think you're right. The people that see them on a regular basis. The podiatrist … whereas I may never have seen them before, but they may have seen them over a period of time”(FG1)
Working in the system
“Us on this side of the table are in smaller communities and the communities, you are really aware, you know…you see Mrs such-and-such down the street, or you see her coming out of the pokies every day… you have a little bit more insight into what's actually going on…I've seen you driving up the wrong side of the road”(FG6)
“Well from where we are at in a bush nursing centre, it’s obviously a little bit different to practice. Whereas we might see the patient more often than what you would in the medical centre. So we can actually see the changes differently, we talk to them a lot more, we go to their home a lot more. So we can certainly pick up a lot more issues and have triggers. We have a lot more time to spend with them. .. Yeah and a lot more time. We’re not financially [driven].We’re not looking at the dollar sign every five minutes as you would in the medical centre”(FG3)
“It's can be a bit of a quagmire, the process of getting them diagnosed … if you do have the concerns about their memory and then need them to go to the memory clinic… The waiting list ... the paperwork you have to fill in”(FG6)
“We get an hour, but half of that is if you have to write 10,000 referrals. It’s like I’ll go through My Aged Care, you need that extra time”(FG5)“All the assessments they have to have, you know like to…It's just ridiculous. Just to even get a district nurse or…Early enough to be able to get support and medication… they've got to have a My Aged Care, or they're under 65 they've got to have this, Can't they take the word of a registered general nurse, who has assessed them as needing this care, but no, they've got to have three other assessments”(FG6)