Factors that influence the quality of paid support for adults with acquired neurological disability: scoping review and thematic synthesis

Figures & data

Table 1. Search strategy.

Search concepts	Terms used in database
Acquired disability	brain injuries (MeSH), head injuries, penetrating (MeSH), cerebral haemorrhage (MeSH), brain injur*, intracranial injur*, TBI, ABI, cognitive dysfunction (MeSH), cognitive disorders (MeSH), cognitive impairment, cognitive disab*, acquired disab*, communication disab*, severe disab*, profound disab*, stroke (MeSH) AND young adult, multiple sclerosis (MeSH), cerebral palsy (MeSH), spinal cord injuries (MeSH), huntington’s disease (MeSH)
Paid support	disability support, disability work*, support work*, attendant care*, paid care*, paid support*, support staff, care assistant, direct support*, home care*, professional support*, active support*, social care, home health aide, quality adj2 support, quality adj2 care
Databases	Medline, CINAHL, PsycINFO, Scopus and Embase

Asterisks depict where alternate endings of the word were searched.

Figure 1. PRISMA flow diagram.

Table 2. Study characteristics.

Authors (year)	Country	Focus	Perspective	Data generation (as reported by authors)	Data analysis (as reported by authors)
Ahlström & Wadensten (2010) [61]	Sweden	Encounters in close care relations between personal assistants and disabled persons of working age, as well as the prerequisites for and obstacles to the success of such encounters, from the perspective of personal assistants.	DSWs	Semi-structured interviews	Qualitative content analysis
Ahlström & Wadensten (2011) [62]	Sweden	Family members’ experiences of personal assistance given to a relative of working age with a functional disability.	COs	Semi-structured interviews	Latent content analysis for narrative text
Ahlström & Wadensten (2012) [63]	Sweden	How personal assistants experience their work and what strategies they employ to alleviate work-related stress.	DSWs	Semi-structured interviews	Latent content analysis for narrative text
Bourke et al. (2019) [64]	New Zealand	How relationships are experienced by people with SCI during the time of transition from spinal units to their community.	PWD	Highly structured interviews	Thematic analysis using a framework approach
Braaf et al. (2018) [65]	Australia	The needs of people living with spinal cord injury, receiving formal carer and hospital services.	PWD	Semi-structured interviews, 30-60 min each	Thematic analysis using a framework approach
Cornwell et al. (2018) [66]	Australia	The perceived adequacy of service supports available to individuals with ABI in Queensland during the transition from hospital to home	Service providers	Survey-based data collection	Inductive thematic analysis
Fadyl et al. (2011) [67]	New Zealand	What constitutes good-quality care for disabled people in New Zealand	PWD, DSWs and COs	Focus groups and semi-structured interviews	Inductive thematic analysis
Gridley et al. (2014) [68]	United Kingdom	Key characteristics of good support from the perspectives of people with complex needs using services and those close to them	PWD, informal carers and DSWs	Semi-structured interviews and 1 focus group	Thematic analysis using a framework approach
Martinsen & Dreyer (2012) [69]	Denmark	The meaning of dependence on care in a private home setting among people living with help requirements for all aspects of daily life.	PWD	Interviews and observation	Phenomenological hermeneutic approach
McPherson et al. (2014) [70]	New Zealand	The connection between informal and formal cares, and how a positive connection or interface might be developed and maintained	Informal carers, DSWs and advocates	Focus groups and semi-structured interviews	Conventional content analysis
Mitsch et al. 2014) [71]	Australia	The provision of, and access to, rehabilitation services to rural and remote areas of NSW	PWD, service providers and COs	Semi-structured interviews	Interpretative phenomenological analysis
Nilsson et al. (2016) [35]	Sweden	Meanings of balance in everyday life for people with long-term illnesses living at home	PWD	Semi-structured interviews, 31–66 min each	Phenomenological hermeneutic approach
Pettersson & Fahlström (2010) [72]	Sweden	Home care staff experiences in relation to assistive devices and assistive device use at work.	DSWs	Semi-structured interviews, 35–90 min each	Qualitative content analysis
Wadensten & Ahlström (2009) [73]	Sweden	Strategies people with severe functional disabilities who receive personal assistance in their homes use in their daily life to achieve autonomy, integrity, influence and participation	PWD	Semi-structured interviews, approx. 90 min each	Latent content analysis
Wadensten & Ahlström (2009) [74]	Sweden	Experiences of persons with severe functional disabilities who receive personal assistance in their homes, the focus being on their daily life in relation to the ethical principles represented in the Swedish Disability Act: autonomy, integrity, influence and participation.	PWD	Semi-structured interviews, approx. 90 min each	Latent content analysis
Yeung et al. (2016) [75]	United Kingdom	The factors affecting people from Chinese backgrounds with physical disabilities in England experiences of social care.	PWD	Semi-structured interviews, 30-80 min each	Thematic analysis

PWD: people with disability; DSW: disability support worker (or eqivalent paid support staff); CO: close other.

Table 3. Participant characteristics.

Authors (year)	Study population (n)	Participants demographics (gender, age mean & range)	Disability type (eligible participants only)	Support needs (PWD)	Perspective
					PWD	DSWs	COs
Ahlström & Wadensten (2010) [61]	DSWs (32)	26 F, 6 M; age: M = 46, range = 22–55	Multiple sclerosis, traumatic brain damage, stroke	5–24 h a day. Personal hygiene, buying groceries, cooking, washing, cleaning, and transport (reported in Ahlstrom, 2006 [76])		✓
Ahlström & Wadensten (2011) [62]	COs (25)	15 F, 10 M; age: M = 47, range not reported.	Multiple sclerosis, acquired brain damage, stroke (reported in Ahlstrom, 2006 [76])	5–24 h a day. Personal hygiene, buying groceries, cooking, washing, cleaning, and transport (reported in Ahlstrom, 2006 [76])			✓
Ahlström & Wadensten (2012) [63]	DSWs (30)	24 F, 6 M; age: M = 39, range = 22–55	Multiple sclerosis, acquired brain damage, stroke (reported in Ahlstrom, 2006)	5–24 h a day. Personal hygiene, buying groceries, cooking, washing, cleaning, and transport (reported in Ahlstrom, 2006 [76])		✓
Bourke et al. (2019) [64]	PWD (19)	6 F, 13 M; age: M not reported, range = 16–64	Spinal cord injury	Not reported	✓
Braaf et al. (2018) [65]	PWD (22)	6 F, 16 M; age: M not reported, range not reported, 55% >50yrs.	Spinal cord injury	Not reported	✓
Cornwell et al. (2018) [66]	Service providers (12)	Gender and age not reported.	Acquired brain injury, traumatic brain injury, stroke, hypoxic brain injury, other neurology/ neurosurgical populations	Not reported		✓
Fadyl et al. (2011) [67]	PWD (20) Health and social care professionals (6) COs and carers (5)	9 F, 11 M; age: M = 45, range = 23–71 4 F, 2 M; age: M = 48, range = 35–66 1 F, 4 M; age: M = 51, range = 33–63	Multiple sclerosis, physical impairments, mixed intellectual impairments, Parkinson's disease, sensory impairment	Not reported	✓	✓	✓
Gridley et al. (2014) [68]	PWD (22) Family carers (23) Specialist organisations (22)	Gender and age not reported.	Complex needs, brain or spinal injury, dementia	Not reported	✓	✓	✓
Martinsen & Dreyer (2012) [69]	PWD (35)	2 F, 14 M; age: M not reported, range = 18–65 (reported in Martinsen et al. 2008 [77]) 19 participants with Duchenne muscular dystrophy. Gender and age not reported.	Spinal cord injury, Duchenne muscular dystrophy	24 h a day Performing daily activities	✓
McPherson et al. (2014) [70]	Formal providers & carer advocates (31) Informal carers (39)	24 F, 7 M; age: M = 48, range = 26–65 34 F, 5 M; age: M = 57, range = 31–76	Stroke, multiple sclerosis, cerebral palsy, traumatic brain injury, degenerative neurological disorder	Not reported		✓	✓
Mitsch et al. 2014) [71]	PWD (6) COs (7) Service providers (59)	6 M; age not reported. 7F; age not reported. Gender and age not reported.	Acquired brain injury	Home care, in-house services or accommodation and living skills support	✓	✓	✓
Nilsson et al. (2016) [35]	PWD (12)	7 F, 5 M; age: M not reported, range 40–66	Multiple sclerosis, stroke, spinal chord with paralysis	4-24 h every day Support in daily life	✓
Pettersson & Fahlström (2010) [72]	DSWs (14)	13 F, 1 M; age: M = 39, range 22–64	Stroke	Not reported		✓
Wadensten & Ahlström (2009) [73]	PWD (26)	15 F, 11 M; age: M = 51, range = 29–60	Multiple sclerosis, primary brain damage, acquired brain damage, stroke (reported in Wadensten & Ahlström [74])	3–41 months (average 16) 5-24 h a day Personal hygiene, cooking, washing, cleaning, shopping and transportation	✓
Wadensten & Ahlström (2009) [74]	PWD (26)	15 F, 11 M; age: M = 51, range = 29–60	Multiple sclerosis, primary brain damage, acquired brain damage, stroke	3–41 months (average 16) 5–24 h a day Personal hygiene, cooking, washing, cleaning, shopping and transportation	✓
Yeung et al. (2016) [75]	PWD (26)	16 F, 10 M; age: M = 54, range = 19–69	Stroke, multiple sclerosis	Not reported	✓

PWD: people with disability; DSW: disability support worker (or eqivalent paid support staff); CO: close other.

Table 4. Participant quotes to illustrate the key themes around factors that influence the quality of support.

	PWD	COs	DSWs
Choice and control	I told them what type of carers I like. I want fit young, not too young or not too old, just middle-aged fit and prepared to do look after me and my baby. [64] Well yeah, I mean it’s about you isn’t it? It’s about your life, you know, it’s about what’s important to you, and you know I mean it’s a process, I mean for some people you know there is a feeling of loss of power. [67] Well, I suppose there’s quite a bit [laughs] I want to choose. I want to choose who, and what we’re going to do together and when – very important things, I think. [73]	Sometimes the assistant does what she wants. But a grown man’s got to make his own decisions and say what he likes and what he doesn’t like – and yet he doesn’t always do that. [62]	I usually try to think like this: ‘how would I react if a person was helping me out at home and making decisions for me? I wouldn’t permit that, would I? Since I’m the one who decides what to do in my own home.’ [61]
Individualised support	The people that help me must respect me. It’s absolutely the most important … and see the human in me, not my disability or that I’m sitting in a wheelchair. [35] When I was on steroids and lost my hair, she came with all these lists of things that I should be doing or trying out, which made me feel that she really you know I was a person to her, but also the um exercise that she gives me the weights and everything, she understands the balance problem. So she will get the movement that I need but she will do it in a different way to perhaps the way she’d do it with somebody else. [67]	One group of young people that have come that were (previously) in another organisation, and they said they found the greatest thing there was getting up in the morning and staff actually talking to them. Not get up, get dressed, and we’ll see you at lunchtime. [67]	Brain injury care pathways that are linear don’t work because people don’t quite live their lives like that when they have cognitive problems. [68]
DSW qualities	I’ve really appreciated receiving what I felt was really good care from someone with a true attitude that they wanted to help me, and they actually really cared about the outcome of that care, and then the details didn’t matter so much. I could inform them along the way if they were doing something that wasn’t quite appropriate or whatever, but it was really that attitude. [67] and understanding of what it’s like for a person to be paralysed, the challenges faced, the difficulties faced for families…A thorough attitude, a practical sense of what we’re trying to achieve… especially spinal cord injuries, and especially quadriplegic levels. [65]	It is just like, they (domiciliary workers) do the job and they can’t really be bothered more. [75]	I don’t know if I’d like it if some man came to wash me – yes, I can imagine how it’d be. I suppose this is what comes easy to me and that’s what the bloke I work for says too, that it’s so easy for me to put myself in his position of being handicapped. Yes, I can imagine just how difficult it must be for him. [61] I put myself in the person‘s place. I‘d say I find that easy, and that‘s what the chap I work for says, that I can so easily put myself into his situation as a disabled person. Yes, I can imagine just how awful his life is. [63]
DSW competence	Knowledge about spinal cord injuries is needed: hygiene, infection control… Just knowledge, understanding, skill development, self-development… [65] (Education) does not happen. It’s such a shame. Because they’ll spend the next twenty, thirty years assembling a little bit of information. I mean it’s bad enough that they don’t know anything about the treatment (for MS), but they have great difficulty in just handling the situation (having a patient with MS). And that’s a problem with their education. [67]	It takes quite a long time to build up that understanding to be able to interpret some gestures, some expressions, some kind of body movement or a mood or whatever as to what that actually means. [67]	If it hadn’t been for the assistive devices it would have been a lot heavier. I would not have managed. Because then he would have had to use me instead. And hung on me. I would not have managed. He is quite tall. It is necessary for both him and me. [72]
Relationship	I need to have somebody around that I can relate to on some level or other. Even though it’s a working relationship, the boundaries get very blurred between where work starts [and ends] and there needs to be some sort of personal relationship as well. [68] It’s important that the personal chemistry works, because otherwise nothing works. I’ve had such unbelievable luck. I’ve really been fortunate to feel that the personal chemistry is right. [74] My helpers know me, or they get to know me, because I have to explain everything due to my severe paralyses. [69]	The assistant is someone close, who gives good advice and comfort when things are difficult. A good friend, because that’s what they become. [62]	We sort of became so close right away. We’re almost the same age and we feel the same and think the same. So we probably felt right away that we’d get along well together and we both think that’s very important. [61] Yes, you must be able to keep a distance. You mustn’t be too close a friend. You must be able to separate friendship and the professional role. [61]
Accessing consistent support	And there is a different care worker every time so I never get any sense of continuity. They don’t seem very caring. They just come to do the job, and it isn’t a very human experience. [75] They are having difficulty finding an extra carer for me, apparently it’s just where I live… this one’s been here with me for a long time… but they’ve got no-one to replace her. [65]	I got home, Homecare rang me and they wanted to give me an hour and 15 minutes a fortnight. I’m doing his showering, toileting and everything for him. I said if I can’t get 5 hours a week I don’t want nothing from you. [71]	If you’re on a pension, you are ‘existing’. If you have compensation, you can buy the carer to explore meaningful occupations that create a ‘living’. [66]^a

PWD: people with disability; DSW: disability support worker (or equivalent paid support staff); CO: close other.

^aCornwell et al. [66] is a quote from a service provider organisation.

Table 5. Themes and sub-themes depicting the factors that influence the quality of paid disability support.

THEME	SUBTHEME	People with disability	Close others	Paid support	Unspecified
Choice and control	Choosing & managing support	64, 65, 73, 74^a	62	63^a
	PWD involved in decision making	35^a, 65, 67, 69, 73, 74	62	63^a	67^a
	Chance to use own capacity	73, 74	62^a	61^a
Individualised support	Person-centred approach	35, 64^a, 67, 68^a, 75	67, 70^a		68^a
	Responsiveness to needs	35, 67, 68^a, 69^a, 73^a, 74^a	67, 68^a, 70^a	61, 68
	Meeting language and cultural needs	67, 75
DSW qualities	Willingness to listen and learn	35^a, 65, 67, 68, 69^a, 74^a	67^a		68^a
	Empathy and understanding	35^a, 65, 67^a, 74^a	62^a, 70^a	61, 63
	Respect	35, 68, 74^a	62	61, 63
DSW competence	Knowledge, training and experience	65, 67	67	63^a, 66^ab	68^a, 70^a, 71^a
	Practical skills (including assistive devices)	35^a, 65, 69^a	62^a	61, 63	67^a
Relationship	Personal chemistry	68, 69, 74	62^a	61, 63^a
	Knowing the individual	35^a, 64, 67, 68, 69, 73^a	62, 67
	Trust	68, 73, 74	70^a	61^a
	Boundaries and friendship	35^a, 64^a, 65, 68, 73, 74^a	62	61, 63^a
Accessing consistent support	Continuity of support	35^a, 64, 65, 68, 69, 73^a, 74^a, 75	62^a, 68	68^a	71^a
	Funding	35^a, 64^a, 65, 67^a, 68^a	68	66^b
	Availability of support	64^a, 65	62^a, 71	66^b	71^a

PWD: people with disability; DSW: disability support worker (or equivalent paid support staff); CO: close other.

^aThe subtheme emerged only from the author reported findings in the paper rather than primary data.

^bCornwell et al. [66] reflects the perspective of service provider organisations.

Table 6. List of DSW qualities referenced in reviewed papers.

	PWD	COs	DSWs
Willing to listen	35^a, 65, 67, 68, 69^a, 74^a	67^a
Understanding	65, 67^a, 74^a	62^a, 70^a	61
Empathetic	35^a, 65, 74^a	70^a	61, 63
Respectful	35, 68, 74^a	62^a	61^a, 63^a
Patient	69		61^a, 63^a
Flexible			61^a, 63^a
Reliable	67, 68
Optimistic			61^a
Considerate			61^a
Trustworthy		70^a	61^a
Creative			61^a
Perceptive			61^a
Focused	69
Friendly	68

PWD: people with disability; DSW: disability support worker (or equivalent paid support staff); CO: close other.

^aThe subtheme emerged only from the author reported findings in the paper, rather than primary data.

Ahlström G, Wadensten B. Encounters in close care relations from the perspective of personal assistants working with persons with severe disability. Health Soc Care Community. 2010;18(2):180–188.

 PubMed Web of Science ®Google Scholar

Ahlström G, Wadensten B. Family members' experiences of personal assistance given to a relative with disabilities. Health Soc Care Community. 2011;19(6):645–652.

 PubMed Web of Science ®Google Scholar

Ahlström G, Wadensten B. Enjoying Work or Burdened by it? How Personal Assistants Experience and Handle Stress at Work. J Soc Work Disabil Rehabil. 2012;11(2):112–127.

 PubMedGoogle Scholar

Bourke JA, Nunnerley JL, Sullivan M, et al. Relationships and the transition from spinal units to community for people with a first spinal cord injury: a New Zealand qualitative study. Disabil Health J. 2019;12(2):257–262.

 PubMed Web of Science ®Google Scholar

Braaf SC, Lennox A, Nunn A, et al. Experiences of hospital readmission and receiving formal carer services following spinal cord injury: a qualitative study to identify needs. Disabil Rehabil. 2018;40(16):1893–1899.

 PubMed Web of Science ®Google Scholar

Cornwell P, Fleming J, Fisher A, et al. Supporting the needs of young adults with acquired brain injury during transition from hospital to home: the Queensland service provider perspective. Brain Impair. 2009;10(3):325–340.

 Web of Science ®Google Scholar

Fadyl JK, McPherson KM, Kayes NM. Perspectives on quality of care for people who experience disability. BMJ Qual Saf. 2011;20(1):87–95.

 PubMed Web of Science ®Google Scholar

Gridley K, Brook J, Glendinning C. Good practice in social care: the views of people with severe and complex needs and those who support them. Health Soc Care Community. 2014;22(6):588–597.

 PubMed Web of Science ®Google Scholar

Martinsen B, Dreyer P. Dependence on care experienced by people living with duchenne muscular dystrophy and spinal cord injury. J Neurosci Nurs. 2012;44(2):82–90.

 PubMed Web of Science ®Google Scholar

McPherson KM, Kayes NK, Moloczij N, et al. Improving the interface between informal carers and formal health and social services: a qualitative study. Int J Nurs Stud. 2014;51(3):418–429.

 PubMed Web of Science ®Google Scholar

Mitsch V, Curtin M, Badge H. The provision of brain injury rehabilitation services for people living in rural and remote New South Wales, Australia. Brain Inj. 2014;28(12):1504–1513.

 PubMed Web of Science ®Google Scholar

Nilsson C, Lindberg B, Skär L, et al. Meanings of balance for people with long-term illnesses. Br J Community Nurs. 2016;21(11):563–567.

 PubMedGoogle Scholar

Pettersson I, Fahlström G. Roles of assistive devices for home care staff in Sweden: a qualitative study. Disabil Rehabil Assist Technol. 2010;5(5):295–304.

 PubMedGoogle Scholar

Wadensten B, Ahlström G. Ethical values in personal assistance: narratives of people with disabilities. Nurs Ethics. 2009;16(6):759–774.

 PubMed Web of Science ®Google Scholar

Wadensten B, Ahlström G. The struggle for dignity by people with severe functional disabilities. Nurs Ethics. 2009;16(4):453–465.

 PubMed Web of Science ®Google Scholar

Yeung EYW, Partridge M, Irvine F. Satisfaction with social care: the experiences of people from Chinese backgrounds with physical disabilities. Health Soc Care Community. 2016;24(6):e144–e154.

 PubMed Web of Science ®Google Scholar

Ahlström G. Personal assistance for patients living with a severe neurological disorder. J Neurosci Nurs. 2006;38(3):183–193.

 PubMedGoogle Scholar

Martinsen B, Harder I, Biering-Sorensen F. The meaning of assisted feeding for people living with spinal cord injury: a phenomenological study. J Adv Nurs. 2008;62(5):533–540.

 PubMed Web of Science ®Google Scholar