“You’re supporting the whole person”: A grounded theory study of quality support according to close others of people with neurological disability

Figures & data

Table 1. Participants characteristics.

Pseudonym	Relation to PwD	PwDs Pseudonym	PwDs disability	PwDs CANS	PwDs support hours/week	PwDs support arrangements
Shannon	Parent	Jo	Acquired brain injury	Level 7	133	Service provider (SS)
Ali	Parent	Ellis	Cerebral palsy	Level 7	168	Online platform / direct employment
Francis	Parent	Jess	Acquired brain injury	Level 7	168	Service provider (SS)
Taylor	Parent	Reese	Acquired brain injury	Level 6	168	Service provider (SS)
Remy	Parent	Drew	Acquired brain injury	Level 4	20	Service provider (HP)
Vic	Parent	Allison	Acquired brain injury	Level 5	42	Online platform
Kelsey	Spouse	Bobby	Acquired brain injury	Level 6	20	Service provider (SS)
Chris	Parent	Jackie	Acquired brain injury	Level 7	168	Service provider (SS + HP)
Laurie	Parent	Jade	Acquired brain injury	Level 6	112	Service provider (SS)
Sammy	Spouse	Lou	Acquired brain injury	Level 7	168	Service provider (SS)

* CANS = Care and Needs Scale (Tate, 2004), SS = self-selected, HP = housing provider.

Table 2. Themes, subthemes and additional quotes illustrating the factors that influence the quality of support.

Theme	Subtheme	Additional quotes
Recognizing the individual	Knowing the person	… because he’s non-verbal it’s all about picking up his body language or moods or he looks different … They’re all able to do that … it’s those little subtleties they pick up. Ali
	Prioritizing the person	This year, probably with COVID, I’ve seen them step up to a level that I’ve never seen with any team before. They protected Jo so well. They dettolled (sanitised) everything in sight. We’ve got a whole duty list of what needs to be cleaned and when, but they were doubling up and doing everything in sight, every day. And because nobody got sick, because everybody had masks on and Jo didn’t get sick, he had their full attention for a whole year. Shannon
	Respecting their autonomy	At some point –like, people have said to me, “How did you do it?” Like, well, you know what, if he was a 35-year-old able bodied person he could be driving up the freeway 200 kilometres on a bike. Which he probably would, knowing Ellis with the personality he’s got … He could be doing anything and I have no control. Dignity of risk, you know. Just because of my fears doesn’t mean I have a right to stop him from living … I say to people, “I would rather Ellis die bungee jumping at 20 than 80 in a beanbag.” Ali
Working well together	Being the right fit	Jess didn’t like men touching her and that much in the beginning, but she’s happy to have male or female carers now. As long as they’re not grossing her out. She had one guy that was really creepy and grossed her out, and she got rid of him very quickly. Francis
	Building a working relationship	That is his life, so they need to have an appreciation of that, and it needs to be a genuine relationship, not just you come in and go through the motions. You have to be able to make that connection, to make Jackie's life work – you know, to enrich Jackie's life otherwise it’s a very, very sort of shallow existence when people are only there to do personal care, shower you, dress you, stick you in front of TV. Chris
	Enriching the person’s experience	They enjoy Allison’s company and they’ll often say, “We love working with Allison. It’s so varied,” “cause they’re not doing the same thing every day”. They’re creative to a degree and thinking of what she will enjoy … I’ll ask “What are you interested in that you could do together with Allison or improve Allison to do something new, something different but still maintain her health and wellbeing and mental capacity to achieve things?” Vic
Maintaining accountability	Wanting to do the role	And there’s a lot of support workers who, it’s just a job. They’re just there for their paycheck. They come along, they do whatever. And that might be okay for some people, but it’s not okay in our case, because Jackie is so dependent on whoever is with him for everything. Chris
	Being prepared for the role	If you’re looking after somebody that’s high care, you’ve got to do everything that they can’t do. It’s not going to suit everybody. And then it gets to clean somebody’s nose or their ears or so they’ve got to get that, that you’re supporting the whole person. Shannon
	Engaging in reflective practice	They have a lot of support from [the key worker], they can get feedback and they can keep on asking about situations if they felt it wasn’t right or something went wrong or something came up. You know lots of different things come up all the time, even after 20 years things still come up differently and I think oh hang on, maybe we should change that or maybe that wasn’t a good idea for Jade to do that that way or whatever, you know? Laurie
Working as a team	Building an effective support team	For notes we do Teams online so everyone can see the notes. So, everyone knows everything what’s going on, every other team member can see the notes at any time. So, if there’s something on there and I think oh, that doesn’t sound right, then I’ll just put a note on what’s it about … At some point during the week, they all cross over and because it’s a small team and we do it on Teams, even when they’re not at work they respond. Ali
	Providing personalized training	There’s a huge amount of training that’s needed for Jackie. It’s takes him months to get to know someone and for someone to get to know him. You know, all the little nuances of his care and that’s just the basics, and then we want to build on that and we want to, you know – there is a programme of him learning to use his switching. There’s also community access, too, and getting him out in the community and how to do that safely. There’s heaps and heaps and heaps. So you don’t want to overwhelm the person when they first start. Chris
	Having an engaged and responsive service provider	That’s another thing they say, “We don’t want to pay overtime. We’ve got some available. They want to work but we don’t want to pay them overtime. They’ve worked over hours and we don’t want to pay them.” So, bad luck. Your daughter will sit there with no one – because it’s all about the money … They’re in it for the money. That’s all they’re in it for. They don’t even seem to have a genuine care about people with disability. They sit in your home and they say what you want them to say, and it’s all rubbish. It’s all lies. It’s just like a car salesman. Taylor
Developing the workforce	Increasing and retaining quality workers	There were some really, really good workers and there were some workers that should not have even set foot in this house. They were in it just to make a bit of money and you know in between jobs or whatever and so yeah, we’ve had all sorts of workers … some I had to get rid of myself because they didn’t behave properly and didn’t treat Jade properly and others that have proved to be you know amazing. Laurie
	Improving working conditions	And the other thing about carers, they need to have the option – some of them who want to be on full-time need it … it’s casual and, like, I’ve had a couple that have had to leave because they wanted to buy flats. Or do something with it, but they kept getting knocked back because they’re only causal workers. You know, so, we lose them for that. They go off and find a different career. Francis
	Raising accountability in the sector	They did not step up to the mark, they waited for my son to fall out of a bus, the disability car … That’s where the problems – I reckon it’s rotting from the head … the facts are, you know, you can say that these people are getting no training, but the thing is the company allowed that to happen, which I just felt was not excusable … I said, “I can’t believe that you knew that this woman needed help, and she needed training, and yet that wasn’t given to her … You could have taken away everything that Drew’s worked for, for the last 15 years.” … it’s ridiculous. Like if you run a programme, or a company, you’re accountable, but that’s the reason why we’ve had to have an enquiry into our disability sector. Remy

Figure 1. Model of quality disability support from the close other perspective.

Left to right process diagram. Left-hand input rectangle with bold-faced heading reading “Working as a team” with the subthemes listed below. Arrow from left-hand rectangle to large circle. Within large circle is the heading “Recognizing the individual” with the subthemes listed below. To the right of the circle are curved forward-back arrows leading to another circle. Right-hand circle has the heading “Working well together” with the subthemes listed below. Line arching over the three shapes with the words “Developing the workforce”. Upward curved line beneath the shapes reading “Maintaining accountability”.

Tate, R. L. (2004). Assessing support needs for people with traumatic brain injury: The care and needs scale (CANS). Brain Injury, 18(5), 445–460. https://doi.org/10.1080/02699050310001641183

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