Abstract
Little is known of the experiences of directly employed care workers communicating with healthcare providers about the situations of their employers. We report findings from 30 in-depth semi-structured interviews with directly employed care workers in England undertaken in 2018–19. Findings relate to role content, communication with healthcare professionals and their own well-being. Directly employed care workers need to be flexible about the tasks they perform and the changing needs of those whom they support. Having to take on health liaison roles can be problematic, and the impact of care work on directly employed workers’ own health and well-being needs further investigation.
Introduction and background
Care at home is becoming increasingly important for the growing population of older people with long-term health conditions or disabilities. Lack of supportive care in the home causes problems for older people and their family carers, as well as the National Health Service (NHS), particularly if it leads to avoidable hospital admission or delayed hospital discharge. Increasing numbers of older people in England pay for their own social care services from their own resources or receive local government funding in the form of a personal budget, which they may take as a direct payment option, subject to eligibility and means-testing assessments. Estimates have reported that by 2020, 48,000 older people would be receiving direct payments for ‘community care’ services, compared to the 214,000 estimated to be receiving local authority-commissioned services (Wittenberg et al, 2018: 7). Directly employed care workers are not included in current attempts to integrate health and social care, but they may offer valuable continuity of care and personalised support for their employers, with potential benefits for healthcare services (Wilcock et al, 2020). As of the start of 2021, there is no guidance about managing working relationships between directly employed care workers and NHS professionals.
Several studies across the globe have explored older people’s experience of receiving state support to meet their care needs in a form of individualised funding (Fleming et al, 2019). In England, if they choose to make arrangements themselves, using their own or local government resources (or a combination of both), they may do so by employing care workers and/or spending monies on equipment or other items. For those eligible for (needs- and means-tested) local government funding, these arrangements are generally referred to as personal budgets in the form of direct payments. These were extended to older people (aged 65 years and over) in 2000. However, for a variety of reasons, such as the limited size of funding allocations, concern about practical responsibilities (FitzGerald Murphy and Kelly, 2019) and satisfaction with existing arrangements, the option of direct payments is not as commonly taken up by older people compared to others. This may explain why outcomes may not substantially improve for older people with personal budgets compared to others receiving services from a home care agency (Woolham et al, 2017). Such findings echo those of an earlier evaluation by Moran et al (2013), which enabled comparison between older people and other adults, and found that gains for older people were often less evident. In addition, while only interviewing a small sample of older people employing staff directly, Rodrigues (2019) observed that these latter arrangements brought high levels of uncertainty and emotional investment, and often necessitated reciprocal gift exchanges. The impact of reduced local government funding as part of UK government policies of austerity may have further diminished the attractiveness of personal budgets among older people (Locke and West, 2018), as well as reducing the numbers of older people entitled to publicly funded social care support from local government.
In contrast, there is limited information about self-funders – people paying for their own care and support – who may not have approached local government or not been considered eligible on grounds of need or means testing. Wittenberg et al (2018) estimated that by 2020, these would number about 126,000 older people. A recent study reporting on interviews with 20 self-funders receiving home care (Baxter et al, 2020) found that their information needs were largely unmet; this has implications for people employing care workers in that they would largely seem to ‘work out’ employment relationships on their own. As Woolham et al (2019) found, this leads to considerable variation in the contracts and also expectations of directly employed workers.
This present study explores relationships between directly employed care workers, sometimes referred to as ‘personal assistants’, and community nurses, general practitioners (GPs) and the older person (defined as age 65 years and over) or family member employing the care worker. These were not specifically addressed by Woolham et al (2019), though they did ask their sample of personal assistants about their views of undertaking more health-related tasks, finding that interest was tempered by caution (Wilcock et al, 2020). In this article, we report the views of directly employed care workers on their experiences of engagement with NHS professionals and healthcare systems. We highlight a need to consider the impact of this type of employment on their own health and well-being.
Aims and objectives
The overall aim of this study is to explore the communication and coordination of care from the three perspectives of directly employed care workers, NHS professionals and older people receiving care and support (and their family where applicable), hereafter referred to as ‘clients’. We illuminate aspects of these relationships that might optimise the well-being of older people and all those supporting them. Our objective is to learn about the working relationships between older people (the care worker’s employer) or their proxy – a family member – with their directly employed care workers and NHS professionals working in the community. Findings from interviews in 2019 with NHS GPs have been published already (Wilcock et al, 2020).
Methods
We chose a qualitative approach using in-depth semi-structured interviews with directly employed care workers. Other studies have not found it easy to reach directly employed care workers who are not registered with any regulator or accessible on any database (Shakespeare et al, 2017; Woolham et al, 2019), meaning that a survey was likely to be unsuccessful. Internationally, this is a workforce about which little is known (Kelly et al, 2020). Their employers are also an unknown group, with those using public funds to pay for their care not necessarily known to public services, and those using their own resources (self-funders) rarely identifiable. While directly employed care workers are found across the UK, our focus was on England, where there is much policy interest in increasing the choices open to older people with eligible care needs to consider employing their own care workers (as reinforced by the Care Act 2014) as part of the personalisation of care. In the knowledge that directly employed care workers are not comprehensively listed with or accessible via any organisations, we used a range of approaches to recruitment. For example, we asked the principal investigator of an earlier research study that had recruited such care workers nationally, though did not cover contacts with health systems as part of their research, if they would re-contact his participants and offer them the opportunity to be interviewed for this present study. We further used snowballing methods (Atkinson and Flint, 2001) to ask participants if they knew of other people who might meet our inclusion criteria and asked other known contacts to circulate our recruitment literature.
Potential participants were invited to take part in an interview through an introductory email from the research study referred to earlier and our other methods. The email included the study participant information sheet. Expressions of interest were followed up by email and telephone by the members of the research team. Seven participants were recruited by snowballing methods. We interviewed until no new themes emerged (34 interviews in total).
Interviews
Semi-structured interview schedules were developed from the literature (building on Manthorpe and Hindes, 2010) and the advice of our study advisory group. Following piloting (four interviews), the schedule was further modified to incorporate new themes identified from the initial interviews, which included participants’ health status and emotional support. Some themes were removed as they were outside the scope of this study; these mostly related to practical workforce data, such as pensions, paid leave and financial payments. The four pilot interviews were conducted face to face and were different from the telephone interviews. Participants in the pilot phase were recruited via snowballing and all worked in one locality. The pilot interviews lasted longer in length than the telephone interviews (2–3 hours versus 30–60 minutes). For these reasons, the pilot interviews are not included in the data set reported here (30 interviews) (for participant information, see Table 1). Interviews gave participants the opportunity to lead the discussion (Ritchie and Spencer, 1993) and took place at a time convenient to them. While we offered face-to-face or telephone options, all wished to be interviewed by telephone, which is similar to Shakespeare et al (2017), where most of their 28 personal assistants/directly employed care workers were interviewed by telephone. Reasons for preferring telephone interviews included: convenience due to geographic location (England-wide study); the length of time the care worker had available; and that the interview timing could be flexible in terms of shift-working or other commitments, such as caring for children and working in the older person’s home, when interviews tended to take place at a time when the employer was settled. Interviews were also arranged with the interviewer by texting that it was a good time to call on a pre-specified day. Interviews were digitally recorded and transcribed verbatim. Fieldnotes were made directly after each interview to record contextual information. These aided interpretation and analysis. Key interview questions covered:
their clients’ needs, needs of the family and their own roles;
experiences of recent healthcare service interactions and what was good and what could have been improved; and
experiences of information sharing and what was good and what could have been improved.
Demographic profile of directly employed care workers
| Age (years) | |
|---|---|
| Mean age | 50 |
| Age range | 26–69 |
| Gender | |
| Male | 20% |
| Female | 80% |
| Ethnic group | |
| White | 90% |
| Black and minority ethnic (BAME) | 10% |
| Nationality | |
| British | 90% |
| Other European Union (EU) | 7% |
| Non-EU | 3% |
| Dependent children | |
| Yes | 23% |
| Family carer (for own family) | 53% |
Note: N = 30.
Analysis
Data were analysed using a detailed thematic approach. Once the entire data set was thematically coded, data extracts were collated under each of these codes. Coding of the data was then checked by two researchers (JW and SI). The codes were then organised into broader themes and sub-themes. We took an inductive approach to analysis (that is, it was data-driven) and linked themes directly to the data. Themes were then reviewed by re-examining corresponding data extracts and checking for disconfirming evidence with un-coded, outlying data.
Older people’s involvement
We consulted with older people and carers about the planning and conduct of this research. Members of the User and Carer Advisory Group of the National Institute of Health Research (NIHR) Policy Research Unit in Health & Social Care Workforce and NIHR Applied Research Collaborative (ARC) South London, King’s College London, UK, were involved in the shaping of the study research questions and methods. We shared our study documentation with wider members of the study-specific advisory group and sought their comments and advice, particularly with the interpretation of emerging findings.
Ethics
Ethical permissions were received for the study from King’s College London Research Ethics Committee (Ref HR-18/19–8771). The research team took care to reassure participants that their anonymity would be protected but that if there were serious concerns about the welfare of participants, then the relevant authorities would be contacted.
Findings
Table 2 presents a summary of the overarching themes that emerged, with sub-themes indicated. These are addressed in turn, though there were overlaps. While the participants used different terms to refer to their work, we use the term ‘directly employed care worker’ (though some were self-employed); likewise, we refer to the older people for whom they were working as their ‘clients’. Other UK research and sector support agencies often use the term ‘personal assistant’ when referring to directly employed care workers but this is not so common internationally (see Fleming et al, 2019) and does not include people who are employing care workers from their own rather than public resources.
Thematic analysis summary
| Overarching theme | Themes |
|---|---|
| Role content | Complex needs of client that increase with ageing; undertaking health-related tasks |
| Communication with healthcare professionals | Maintaining client autonomy; knowing client and local services; challenging professionals; teamworking |
| Impact of role on directly employed care workers | Physical and emotional strain; training helps manage role; GP support/communication helps |
Role content
‘I’m not a live-in nurse, but I notice that there is more and more – I think because of the cost – people feel that they say, “My mum has become old and frail”, but it’s very much more than that but they can’t possibly stretch the costs to it [nursing care]. So, many people [have high needs] – this lady [my client] as well has got a hospital bed at home – and some of them have to have a hoist to move around. It’s a very responsible job.’ (DECW05)
‘He had limited use of his hands, fingers; he could use one arm partially, with very limited movement; he could twist his head, very limitedly, and he could wiggle his toes. So, his care needs were – he needed full bed assistance, through washing, personal care, dressing, then hoisting into his motorised wheelchair and then dressing from there, and then I would feed him. And then through the course of the day, if he needed the toilet again, it usually involved hoisting back onto the bed to use a bottle, and obviously hoist onto the toilet.’ (DECW11)
‘She [98-year-old client] had dementia, and it kind of came and went. She was very often very sharp and you wouldn’t experience the dementia but then she might have a bout of it. It kind of came and went, which can be quite unusual. She had physical needs. She used a wheelchair and … she would suffer certain things like, for example, one of the things, as I say, was choking; you had to really kind of be careful about how you’re presenting food to her and how she’s eating it because she very often would start talking and then choke. And physically she was very, very frail; physically very, very frail.’ (DECW09)
‘[Would help with] washing. I used to cut her hair, yeah, changing clothes, getting her to have a rest, a lot of physical care. She was very petite, so … she would need assistance in the bathroom, and it took her a long time to accept that because she was quite proud, so … yeah, but she did eventually.… She had some medication; nothing heavy-duty. Another thing I did a lot with her, which is one area I’m interested in, I’d spend a lot of time finding ways to remind her of things. So, just like leaving her, well, actually at the end she was having 24-hour care, but initially, I would do things like make a big sign as to what day it is, what time it is and who’s with her and all the information so she could just … because she would forget. She might ask you a question, so she could just look at it and see for herself certain things. Just practical things, like if she went into the wrong bathroom there was a big bright sign in the bathroom, please go to the other one, that type of thing, yeah.’ (DECW09)
Undertaking health-related activities
‘You have to work in the reality, and a silly thing is that we have a pain morphine patch, like a plaster, that I change once a week and that’s also one of those things that should be dealt with by a nurse. Anyhow, I do it and I fill a record out for it.’ (DECW05)
‘Then she had a procedure and they inserted a catheter into her bowel, and then after a couple of days, she was brought home. So, in the last year, she was living with that catheter, and that catheter I have to change every – of course, I can’t remember – three, four, five times a day probably. The nurse will come every day if she was looking around at everything, it’s fine with the catheter. So, the needs were becoming more complex, and complex. So, pressure sore, catheter, so everything was there.’ (DECW06)
‘She was on the floor, just like she was getting in the bed at night, she fell against the heating and there was on the floor. And I had to put a sheet underneath her and pull from the bedroom to the bathroom and then put the sling under her to get her up, and she’s quite big [the client refused to allow an ambulance to be called].’ (DECW27)
Not all health-related activities were so risky or onerous, but some did require infection control: “occasionally dressings have come off and I’ve reapplied a dressing because the district nurses can’t get there or they can’t come back out and I can’t have something open, so I’ve just reapplied a dressing, obviously with gloves and apron” (DECW25). Others described medicine management at home, illustrative of the many long-term conditions of several clients: “He had a huge quantity of things [medications] that he took. Some of it he got in a blister pack but there was a whole array of bottles of different things that I had to put into a little pot for him to take, that was about it” (DECW18). Finally, a minority accompanied their clients outside the home to appointments with various healthcare practitioners in primary and specialist NHS teams and locations: “I go to all his appointments with him, them sorts of things, really.… All, like, urology, epilepsy doctors, diabetes, chiropodist, all the everyday sort of stuff” (DECW10).
Communication with healthcare professionals
‘We always expect to have a telephone list with the GP and district nurse team and so on. It’s a part of our job to liaise with them or try to engage with occupational therapists. It depends on [how] near the relatives live and on how much they are involved in that part of things.’ (DECW05)
‘The physio[therapist] was absolutely amazing. He was very, very well trained, very knowledgeable, and he had a lot of outside interests in holistic therapies and things like that, so he would offer a very good physio service, very motivating and uplifting. We had a lot of shared interests. So, it really, really was good at times when the three of us were conversing on things, talking about … the physio that were being done and mental health issues and things like that. We were always very respective of the client, so he would lead the conversation but the conversation then would open up and then the physio … sometimes would help him with … his low moods, and if I had anything to offer from my studies … then I would offer it, and again it would get into a three-way conversation.’ (DECW11)
‘[Palliative care nurses] have been really, really good. Supportive to the family, supportive to the person, really supported me in terms of maybe what action to take next or talking to the family, regularly visiting the client to monitor how things are.’ (DECW25)
‘The dentist was absolutely amazing. She’d [client had] been to him before but he [dentist] seems to be used to dealing with people with mental health issues and … he was really good. I just sat with her and she held my hand and that, and I just reassured her and he was so good and just exactly knew how to put her at ease … it kind of came from the heart, you could just tell that he was naturally very good.’ (DECW14)
Interviewer:‘If you needed to phone the GP does that tend to go quite well, are they happy to speak with you?’DECW05:‘Yes, that’s rarely a problem. I’ve been with patients to hospitals many times during the years, and that goes quite well.’
‘Well, the main appointment is for him but they tend to usually ask me after they’ve listened to him – “Any concerns or anything you need to tell us?” – because he’s not very good at expressing himself. So, you know.… No, to be fair, I’m quite hot on all appointments and actually anything that I need to get across; it’s more that he doesn’t relay that, so it’s more down to me to do, to be honest with you.’ (DECW10)
‘I think it’s a real fine balancing act. This is where I think a lot of people become a bit unstuck because you are expected to maintain people’s independence and yet, as my experience has been throughout my entire working life, people are … there’s still a terribly paternalistic attitude towards disabled people: “Does he take sugar?”, type of thing. That still goes on, unfortunately, and I think it’s really difficult to stand back a little bit and say, “Well, it’s not me, it’s the person I’m looking after”, do you know what I mean? People still address you instead of the disabled person.… In fact – this is just a personal thing from very long experience – I think the general public’s attitude to disability has become much, much better, but the professionals, it hasn’t changed very much at all.’ (DECW08)
‘One thing … there was a couple of things that I wasn’t happy about with regard to the lady, this 98-year-old lady, which is you might get someone come to do her feet, or district nurse give an injection, and they would call her “sweetie” and “sweetheart” and “my lovely”, and that’s so inappropriate and really patronising, because she found it patronising; she was a very intelligent person and she felt like they were treating her like a silly old woman.… So, in the end, after that happened a few times, I would kind of say politely to people that they should address her by her name only.… Generally, I’d say my experience has been – apart from this patronising thing – my experience has been very good, really.’ (DECW09)
‘I didn’t get the feeling that they [healthcare professionals who visited the house] were particularly open-minded about … how [client] was experiencing his illness, and I just got the feeling it didn’t fit with the way they saw things, and so it wasn’t a good match, if you know what I mean, they weren’t particularly helping him in the way that … he was approaching it himself.… Too much a standard model, yeah, too much a standard model that they were trying to impose on him and not really understanding how it was.’ (DECW18)
While not employing professional language such as ‘person-centred care’, there were many indications that participants put their client at the centre of their concerns and felt proud about this distinction.
Liaison with healthcare professionals
‘I went to a lady who had been diabetic since she was five and now she was in her 80s. She was struggling to manage with her insulin, and one particular district nurse was very supportive and really brilliant. ‘Cause she had a bad turn whilst I was with this lady, and the district nurse guided me through everything over the phone, ‘cause it was a bit frightening at the time. So, yeah, I met some really nice, really good, supportive district nurses.’ (DEHCW07)
‘Well, I’ve found one or two [clients] on the floor and managed to help them to get up and phoned the GP to ask for a home visit. Or, if they become more confused, because a lot of problems are with urine infections in later years, where they become very confused but they’re not aware that they are. So, yes, that was a concern. But very often, even then, it was the district nurse that would come out and test them.’ (DEHCW07)
‘So, someone that … maybe we had to get someone from the agency to do a couple of days or someone to do respite, just so they’d know all about her; they could write … just read instead of having to work with her a lot and just know things about her.’ (DECW09)
‘The only times it got more awkward were when you needed home visits, and it always seemed to be that they would say, “The doctor’s really busy right now”, and you would kind of assume they would try and pull up the client’s details on the screen and see that he were fully disabled and he couldn’t just go in, whereas sometimes you almost felt like you had to fight for them to really put you on a priority.’ (DECW11)
‘It was an experience, yeah, it was a response, but they’ll come, of course, but they knew her because they knew her for years, so they didn’t rush in a sense, they knew that it was not urgent, especially because they knew that a carer lives with her, so she’s safe. In many senses, in the worst-case scenario, I would call the emergency [service], but she was safe. They knew that she was safe, she’s not alone, she’s not living alone.’ (DECW06)
‘So, this provides them assurance that everything is going to be fine. They see it as just a routine, just to – well, because frankly this is an issue with old people, and I’m getting old myself – in many cases, sometimes I would say, in many cases, the old – I would say, people in general – but people, including [client], she was unnecessarily calling the GP, and I was sometimes reluctant because I knew that there was nothing wrong, it could be fixed by myself. But she was insisting and I couldn’t refuse. I was calling … because if she knew that I had called the GP, she was relaxing.’ (DECW06)
Working as part of a team
‘Yes, when they [healthcare professionals] came, there was a kind of care plan, what you have to do, especially she.… Yes, the care was quite good from the nurses because when she was bedbound, she had pressure sores on her feet, so they were coming every day to change, to clean. So, it was quite good, yes. So, we were working as a team because we’re in the house, you will come, “Okay, we’ll chat to each other what [client] needs today, what she most needs”, etc.’ (DECW06)
‘There was one other thing, though, which I thought was a worry, and that was that the doctors would come … initially, she’d spend a bit of time on her own but then it was deemed that it wasn’t appropriate, but during that time, you could come round and a doctor might have just come and given an injection without actually, or a district nurse, without actually making an appointment, and that was a bit annoying because she’s very vulnerable and we’re teaching her [98 year old client] not to speak to people, give information on the telephone or open the … allow anyone to come through the front door, that type of thing. So, that was one thing that did used to happen.… Yeah, that was either you’d come round and someone’s arrived and given her a flu jab, yet no one had any idea that they were coming.’ (DECW09)
Health-related impact of the role
DECW05:‘The work intensity on 24 hours, you don’t do very much, but you are very much in demand all the time and it’s very absorbing, and I’m also very tired after the two weeks [working two weeks as a live-in care worker then four days off]. I’m often exhausted.’Interviewer:‘Is that enough for you to recharge if you’re quite exhausted sometimes?’DECW05:‘Yes, I am but also I can’t really afford being off.’
‘[The] emotionally … and psychological impact was in the last year, when she [client] was bedbound. I would say probably two years, but in the last year, she was bedbound and, yes, she was deteriorating, she was already.… So, in a sense, the last year was the most demanding because I had to stay almost 24/7 there.’ (DECW06)
‘This guy I look after now, for me, I come home… I only do one evening a week now simply because I come home full of her [client’s wife] problems.… So, I do find that, yeah, it plays on my mind. Because I live [nearby], if she has got any problems, she does tend to turn to me. She has turned up a couple of times in just a total state, so I just have to talk to her. There were others that I’ve come home and thought, oh.… In fact, I have actually gone back out when I’ve clocked off and gone back and checked on someone if I’ve got concerns.’ (DECW07)
‘Yeah, it’s a hugely stressful role, physically and emotionally. So, my GP, who I’ve mentioned, that service is exceptional, and I’ve always been down as a carer, so before I was employed as a PA [personal assistant], and I know that that has … that influences decisions, that has an impact when they review my record. I don’t think the other PAs that we’ve come across that have worked for our family have had that level of support from their GP; I just haven’t encountered that.’ (DECW19)
‘I think the best thing is that you work just for one person and you know each other very well. It’s kind of … it’s quite rewarding, I think, as well; you know that you’re helping them and you know your job so well. So, I think it’s just this feeling of being good at your work, even with, as complex as it is, and actually it is quite stressful that someone relies on you, but it’s actually a good feeling that someone is looking in for your support and your knowledge.’ (DECW29)
Discussion
Three main themes arose from the interview data: the broad range of activities covered by directly employed care worker’s role; interactions with healthcare professionals; and their work’s impact on their own health and well-being. Several gave accounts of supporting people whose problems fluctuated and whose health declined rapidly, most often related to dementia. This perhaps relates to our research focus on older people and their directly employed care workers; other studies of direct care workers have interviewed those employed by younger age groups, such as younger adults with learning disabilities (Graham, 2015) and younger physically disabled adults (Graby’s 2018). These studies provide accounts of supporting people with activities outside the home, including access to employment. Our study is limited by the interview method, in which recall may have been partial and exceptional events recalled more readily than the usual. We did not observe the participants at work, which might have helped better understand their routines and relationships; this lack of observation studies of care at home is widespread (Leverton et al, 2019). Furthermore, as many in our sample had been interviewed in a previous study, participants were likely to have remained in their work and had not quit this work for various reasons, such as major dissatisfactions, better opportunities or poor health. However, the strengths of our study are that we recruited participants from different parts of England and our interviews were able to probe for experience and identify new themes. Our study is the first to explore relationships with healthcare professionals from the perspectives of directly employed care workers in the UK in any depth, adding to the evidence about working relationships in this developing area of social care.
For those clients who had no family or whose family were not substantially involved, the role involved some liaison with NHS staff as needed; this included ensuring their client’s safety, as well as advocating for their needs and dignity. Interactions with healthcare staff were few and mostly positive but sometimes involved attitudinal challenges of professionals, use of the care workers’ knowledge of the client and use of their own experiences of health systems to advocate for their clients. Rather than commenting on their perceptions of the adequacy or nature of clinical treatment, concerns about healthcare professionals related to their behaviour and included not being informed about visits, being spoken to instead of the client and witnessing patronising or disrespectful behaviour. None seemed to question medical or nursing interventions and, as Reckrey et al (2020) found in their interviews with older people, proxies and care workers in the US, direct communication between care workers and the healthcare team was rare. There were few reports in the present study of care workers providing regular information to healthcare professionals and no reports of communicating regularly to those local authorities who were generally indirectly funding their employment. The use of information technology seemed limited to the personal use of participants’ own telephones to keep in touch with clients and their families, or to make calls on their behalf. As Barr et al (2017) cautioned, if there is no prior working relationship, then installing information and communication technology (ICT) will only make things worse. Use of other technology was rarely mentioned.
The lack of engagement of directly employed care workers with healthcare professionals is similar but not identical to the experiences of UK agency-employed home care workers interviewed about their relationships with healthcare professionals visiting their clients at home (Wilcock et al, 2020). This suggests that it is being a home care worker, not being professionally qualified and not being part of the NHS or statutory social care sector that affects the feelings of healthcare staff about who merits being a ‘team member’, whose skills and respect for confidentiality and for the norms of professionalism can be taken for granted. Hall et al (2017: 24) also heard from care agencies of a ‘lack of respect’ for their services. Our participants situated themselves in the context of care work rather than nursing, suggesting that moves to encourage them to take on healthcare tasks (as explored by Wilcock et al, 2020) will require shifts in attitudes, not just in commissioning practice. What Porter et al (2020: 206) referred to as the need to understand the ‘micropolitics of interpersonal cooperation’ in personal assistance relationships would seem to extend not just to the employer and employee relationship, but also to their engagement with others.
Our study suggests that the relationship between health status and the specific nature of the direct employment of care workers needs further exploration, supporting Graby’s (2018) recommendations to do this. There were indications that some participants’ health and well-being were being compromised by the emotional impact of their clients’ conditions, a sense of professional isolation, sleep disturbance and the difficulties of maintaining boundaries between work and other aspects of their life. This stands in some contrast to the circumstances of care workers employed by an agency, where managers are potential mediators between their employees and clients, addressing possible over-commitment as well as the risks of blurring boundaries (see Woolham et al, 2019), or, as Shakespeare et al (2017: 23) described it, ‘giving too much’. In home care agency work, contracts of employment exist between staff and the employing agency, and there are contracts between clients and the agency outlining the responsibilities of all parties. Other studies have commented on the stress associated with the directly employed care worker (personal assistant) role through personal investment in the role (Ahlström and Wadensten, 2012), especially when it is accompanied by immigration uncertainties (Christensen and Manthorpe, 2016). However, Shakespeare et al (2017: 24) also noted that some directly employed care workers were adept at maintaining their ‘personal realm’, indicating the need to avoid stereotyping.
Conclusion
Directly employed care workers need to be flexible in managing both the range of tasks they perform (some of which may entail nursing procedures), the emotional labour of their work and the changing needs of those whom they support. In healthcare tasks, they need to be more professional in their approach than in other aspects of work, which may be more negotiable. Having to substitute for family members in health liaison, care management or advocacy roles can be problematic if healthcare workers do not seem to show them respect. The impact of work on directly employed care workers’ own health and well-being merits further investigation.
Funding
This work was supported by the Dunhill Medical Trust (see: http://dunhillmedical.org.uk) under Grant R555/0217. The views presented in this article are those of the authors alone.
Acknowledgements
The authors are grateful to all those who gave their time and participated in the study. We particularly acknowledge the generous support with recruitment of John Woolham of the NIHR Policy Research Unit in Health & Social Care Workforce and NIHR Applied Research Collaborative (ARC) South London, King’s College London, UK.
Conflict of interest
The authors declare that there is no conflict of interest.
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