Social care personal assistants: the future of person-centred care?

Research proposal by Daniel Lombard

About the author 

Daniel Lombard (pictured, right) is an independent researcher in health and social care, who graduated from University of Bristol with a PhD in Social Policy in 2022. Daniel is planning to submit a funding application for a postdoctoral research project on personal assistants and individual employers of personal assistants in England. This article sets out an idea for a study about how personal assistants and employers understand and implement person-centred care, building on the findings of Daniel's PhD, which was also about person-centred care. The purpose of the article is to start a conversation with relevant people in the care sector who may be able to advise on the direction of the proposal, and may wish to collaborate further on the research in future.

Please leave comments on this blog if you wish to contribute to the discussion, or feel free to email Daniel.

Email: danielmplombard@gmail.com 

X: x.com/DanielLomb65393

LinkedIn: www.linkedin.com/in/daniellombard/

Introduction

The social care workforce is one of the largest groups of workers in the economy in England, with anestimated 1.59 million people working in adult social care as of 2023/24. Workforce numbers include people working in familiar care settings, such as nursing homes. They also include a group less visible and less familiar to the public, who carry out vital work away from the spotlight. They are personal assistants, who offer care and support to adults in their own homes and in the community. There are around 100,000 personal assistants in England, according to Skills for Care. These care workers are unique in having a direct employment relationship with the older adults or those with disabilities they are supporting. Personal assistants are typically self-employed, or employed directly by the person receiving support. Personal assistance tasks tend to include personal care, assisting with leisure activities, shopping, preparing meals, assisting with medical appointments and driving clients to places (Woolham et al.,2019a,p35). They provide support according to the person’s individual wishes and interests (Skills for Care, 2024a). The money to pay the personal assistant’s wages often comes from a person’s personal budget, which comes from local authority care funding. Alternatively, people may use their own savings or income to pay for a personal assistant privately.

On the surface, personal assistant services may not appear very different from conventional care services, such as domiciliary care agencies, which send care workers to visit people in their own homes. But the personal assistance model, which gives adults opportunities to control how, when, and by whom they are supported, has potential to offer a more empowering care service for people requiring support (Porter et al., 2022). This potential for greater empowerment is partly because of the difference in employment arrangements. Whereas many domiciliary and residential care workers are employed by a company, which enters into contracts with individual clients, personal assistants are often employed directly by the person themselves. This arrangement shifts power towards the individual person, giving them more scope for making decisions on recruitment, scheduling, and how care is provided. This sense of individualised control over care and support, when it is effective, appears to offer greater opportunities for person-centred care.

Policy background

Policy guidance and legislation require care services to be personalised. The Care Act (2014) and guidance for older people’s support (National Institute for Healthand Care Excellence,2015), require professionals to promote choice and control, and to tailor care plans to individual people. In this context, personal assistants acquire new significance, because of the scope of personal assistants to offer more flexible, creative, care and support, tailored more neatly around the lives of people with care needs than other services.

Workforce numbers 

Despite this potential, personal assistants make up only 6.7% of the overall social care workforce in England. Skills for Care has published figures in its latest report on the adult social care workforce in England. 

According to this report, an estimated 65,000 people who receive direct payments also employ their own staff – around 32% of the 210,000 adults in England receiving direct payments. The number of adult social care posts filled by staff working for direct payment recipients is estimated at 123,000, according to Skills for Care. As a proportion of the adult social care workforce as a whole, these personal assistance posts currently represent 7.2% of the workforce in England – a figure which has decreased in recent years. (For context, the majority of filled posts are working for independent sector employers – that is, 1.35 million, or 79%.) The figure of 123,000 posts working for direct payment users is greater than the estimated number of personal assistants overall, because some personal assistants take on more than one position. Many personal assistants work part-time, so the figures for full-time equivalent posts are shown below for comparison purposes. According to estimates in the Skills for Care report (2024c, p28) there were a total of 1,170,000 FTE filled posts in 2023/24. Personal assistants account for 62,000, or 5.2%, of these posts.

Skills for Care’s estimate of 100,000 personal assistants does not include data on privately employed personal assistants, which means the figure is likely an underestimate. Additionally, only a small minority of personal assistants taking part in a research study (Woolham et al., 2019a) reported being a trade union member. This lack of information about, and representation of, the workforce group are some of the factors contributing to an overall sense of fragmentation and isolation among personal assistants. Personal assistants, who are not a regulated profession in England, have been described as ‘hidden’ (Woolham et al., 2019b) and ‘invisible’ (Norrie et al., 2022). Recently, some research reports about this workforce group in the UK and Europe have appeared, creating a better understanding about the group and the people employing them. But there remain unanswered questions, especially about the interpretations of person-centred care. I plan to address these gaps in understanding by conducting an in-depth research project on personal assistants and the people employing them, and the practical ways the two parties interpret and implement person-centred care. I will apply for funding to produce high-quality research into this topic. One of the ways in which the quality of this proposed research may be improved is through collaboration. Therefore, I intend to involve various interested parties in research, even with the proposal being in infancy.

Please take the time to read my proposal and take part in the conversation by leaving a comment below, or by emailing me directly. You could comment on the questions posed at the end, or any other aspect of the research design. First, I set the scene by describing the state of relevant literature on personal assistants. Next, I frame the position of personal assistants within the current policy landscape and highlight the timeliness of the research. Finally, I round off the article with unanswered questions and what happens next.

Literature on social care personal assistants

While personal assistants are an under-researched group, recent years have seen the publication of important studies on the group. Here are some key findings.

• An online survey of people using personal assistance and other people with an interest in the topic, in various European countries including the UK (Mladenov, 2019). The survey, which yielded 54 responses, aimed to explore factors influencing the delivery of ‘good’ personal assistance, in terms of how much choice and control could be offered to people. It found the most influential factors were people being able to choose their personal assistant, and the model being underpinned by an independent living philosophy.

• A qualitative study of the personal assistant role, the experiences of personal assistants in supporting adults, and the involvement of local authorities in matching personal assistants with people requiring care and support (Woolham et al., 2019a). There were interviews with 105 personal assistants and 26 other people with an interest in the topic, from across England. (The people with an interest in the topic were workforce development experts or people employing personal assistants.) Personal assistants felt their role was highly rewarding, because of the time allowed to build relationships with the employer and greater consistency of care. The role was felt to be flexible, and capable of adapting to changes in the person’s health, although some assistants said they would decline offers of support in some areas, such as a person’s finances or looking after children. Most personal assistants had taken part in training, but availability of training varied depending on the region of England.

• (The previous study by Kings College London researchers led to linked reports about personal assistants and personal health budgets - Norrie et al., 2020 – and experiences of personal assistants in the COVID-19 pandemic – Norrie et al., 2022.)

• A qualitative study of relationships between personal assistants and adults with disabilities (Porter et al., 2022), based on one-to-one interviews with 30 adults with disabilities and 28 personal assistants. (There was no link between the participants, i.e. none of them worked together or were known to each other.) The research found it was important for personal assistants to be matched with adults requiring support who had similar personalities and values. When there discordant personalities and values, it could sometimes lead to conflict between the two parties.
  
  
• A wide-scale survey of personal assistants and people using personal budgets to employ them (Skills for Care, 2024a). In terms of responses to the survey, using both paper and online formats, there were 2,982 from individual employers and 1,646 from personal assistants from across England. The research identified a range of findings about the workforce and experiences of individual employers. For example, there was a turnover rate of 18%, which is lower than the rate for care workers in the independent sector (36%). A majority of individual employers said they had not accessed any training for their personal assistant (73%). Finally, many personal assistants said they entered the personal assistance role through knowing the employer as a relative or friend already (52%).

The combination of qualitative (interview-based) and quantitative (survey) research offer important insights into the personal assistant role, and some of the challenges faced by assistants and the people employing them. Additionally, my own research on person-centred care (Lombard, 2024) identified three philosophies of the concept applied by care workers and managers in their day-to-day practice with older people – Nurturing Agency, Nurturing Mental Health, and Nurturing Intimacy. Some of the participant care workers included personal assistants, who provided some of the most lucid and varied accounts of the topic.
My plan is to build on the findings of this literature by concurrently examining the experiences of people employing personal assistants, and the assistants they have in place at the time of the research, in granular detail, in the context of person-centred care.

I will explain the reasons for focusing on person-centred care briefly, before outlining the proposal for research itself.

Problems surrounding person-centred care

Policy-makers have embraced the idea of building care services around the needs of individual people, with many policy documents and legislative acts promoting such principles in recent decades. The Care Act 2014, which applies to England, pledges to frame a person centred system of care around the ‘individual’s views, wishes, feelings and beliefs’ (Department of Health and Social Care, 2020, paragraph 1.14). Regulations in England define ‘person-centred’ as care which is appropriate, meets the needs of people using services, and reflects their preferences. In a similar vein, the Social Services and Well-being (Wales) Act 2014 requires care professionals to have regard to the individual’s views, wishes and feelings, and enable the person to participate in decisions that affect him or her. The idea of person-centredness is frequently held to be synonymous with quality in adult care (Edvardsson et al., 2010). Researchers have tried to frame these principles of empowerment and individualism around the professional roles and responsibilities of care staff and nurses. Several practical models of care guidance on implementing person-centred care in health and social care have emerged in recent years (McCormack, 2003; Nolan et al., 2004; Brooker and Latham, 2015).

Person-centred care, which many commentators argue is aimed at boosting autonomy among people using services, has received mixed responses from academics and people using services. Some commentators believe person-centred approaches are the right way forward. People “want care that is joined up around their needs, that is delivered compassionately and that is tailored to their individual circumstances” (Glasby, 2017, p75). Glasby argues it is down to sector leaders and front-line staff to deliver such care. Yet person-centred care has proved controversial for some demographic groups. It has been argued that policies emphasising choice and control, which are apparently designed for working-age people, are inappropriate for older people. This mismatch is because the person-centred care agenda overlooks the fundamental human need for social relationships (Lloyd, 2010). As Lloyd suggests, person-centred care policies do not adequately address the diversity of needs among older people, especially those turning to social care services when their health is declining in the period before death. Additionally, principles linked to person-centred care can be complex, and difficult for some care staff to understand and implement in day-to-day practice (Brooker and Latham, 2015). Some staff may be able to make sense of values-based policies easily, but many others struggle to do so (Brooker, 2004).

Indeed, a fundamental problem is that there remains no universally accepted definition of person-centred care (Byrne et al, 2020). Researchers have attempted to identify characteristics linked to effective person-centred care, but the outcome of much literature has resulted in tautological arguments. That is, that research aimed at training staff in person-centred care could arguably improve the delivery of person-centred care, but only as measured by the same research (Pilnick, 2022).

Little is known about the interpretations and experiences of person-centred care among personal assistants and people they support. This lack of information is surprising, given the potential for personal assistants to answer the call for greater person-centred are by offering continuity and responsiveness of care. Closer examination of the practices, conversations, and core principles adopted and experienced by personal assistants and the people employing them during day-to-day caring is required. More detailed understanding of the way these stakeholders make sense of complex policy objectives could enhance the evidence base for workforce development and lead to improvements in future care services. 

Rationale for research

Financial pressure on local authorities, coupled with rising demand for care services, has created a funding crisis affecting many parts of the care sector in England. Many care providers face staff shortages, which have disrupted the continuity of care and left workers feeling exhausted (Health and Social Care Committee, 2022). A combination of low pay, burnout, and cost-of-living challenges meant care homes in England experienced staff turnover rates of 38% in February 2022 – the turnover rate for care workers overall was 30% as of 2023/24. There was an overall vacancy rate among care workers in England of around 10%, as of 2023/24, and 11% for personal assistants. These figures are much higher than the average vacancy rate across the economy in England of 2.8% (Skills for Care, 2024c). 

A commission on the future of the National Health Service (NHS) in the UK, published in the Lancet in 2021, laid out a series of challenges to health and social care. For example, the number of people aged 65 and above with complex multimorbidity (i.e. having more than one health condition) in England is projected to double between 2015 and 2035. The commission said all constituent countries of the UK were facing a health and care workforce crisis. It called for new strategies to develop a sustainable, skilled, and inclusive health and care workforce to meet changing health and care needs, recommending the NHS develop new ways of working with patients and citizens. Skills for Care’s workforce development strategy for England, published in 2024, is more specific in its plan to strengthen the capacity of the workforce. It earmarked personal assistants as a key group for the future of adult care (Skills for Care, 2024b). The strategy states: “We will need more personal assistants...We might anticipate that the expectation of people having choice and control will continue and the need for personal assistants will continue.” The strategy made the assumption that care services would continue an ongoing shift towards community settings, as more people were likely to be supported at home in the future. The workforce strategy adds there should be an emphasis on coastal and rural areas, which tend to have an ageing population with growing needs. Such areas will need to entice working age people to live on the coast or in the countryside, or people already living in those areas will need to be encouraged to work in adult care.

Given the scale of challenges facing adult social care, the sector will need to develop ways to improve the workforce. Policy makers’ enthusiasm for individualised care models shows no signs of abating, and greater understanding of how person-centred care principles are implemented in practice is needed. A research project addressing both of these challenges would offer a timely contribution to ongoing debates about how to improve social care and strengthen the workforce, in the face of significant demographic challenges predicted by experts. 

My research proposal

I wish to explore the following research questions:

1. How do people employing personal assistants, and the personal assistants themselves, interpret and experience person-centred care?
2. How do people employing personal assistants and personal assistants perceive person-centred care?
3. Which skills are associated with person-centred care in relation to personal assistants and the work they do with adults?

Proposed research design

This table includes details of the research design, in terms of participant recruitment and the structure of the research activities.

Participant profile

People from the following two groups will be invited to participate in the research.

Group A) People with disabilities and chronic conditions employing personal assistants on a long-term basis;

and

Group B) personal assistants employed by participants in Group B.

The cohort of participants in Group A should include a combination of people drawing funds from a personal budget and those with private funding arrangements. The cohort should include a variety of ages, split between people aged between 18 and 64, and 65 years and over. Adults should have mental capacity to give consent to participate in the research project.

The cohort of participants in Group B should have a minimum of one year’s experience as a personal assistant.

Each dyad should have an agreement in place with each other that they are likely to be in a caring relationship for the duration of the fieldwork period.

Number of participants

Estimated number of participants is around 8 dyads, or 16 people in total. 

Length of fieldwork period

1 year.

Research activity schedule

Observation and interviews will be conducted at 3 intervals across the fieldwork period: at the beginning of the period, then again at 6 months, and finally at 12 months. 

Recruitment

Participants will be recruited via user-led organisations supporting people with disabilities and older people; advertising in community centres in the target recruitment areas; and online directories of personal assistants. Participants should be recruited from seaside towns and cities in England. This because one of the priority areas highlighted by the Skills for Care workforce strategy is coastal areas, where the population is likely to be ageing, and with growing needs.

Remuneration

Participants will be offered £20 in shopping vouchers for each research segment they complete, in recognition of their time and expertise. That is, for each interview, a participant will receive £20 in vouchers; for each observation, a participant will receive £20 in vouchers; and for participating in the diary entries across one fieldwork segment (four months), each participant will receive £20 in vouchers. Plus, a final voucher of £25 will be offered for participants who complete every fieldwork segment in which they are invited to participate. In total, the maximum amount they could receive would be £205 in vouchers.

Ethics

I will take time to explain the project clearly and thoroughly to potential participants. Participation in the project will be voluntary, and people may withdraw their participation at any time, without giving a reason. If anyone becomes sick, distressed, or uncomfortable during interviews or observation I will ensure they are given time and space to take a break or terminate the research activity. Participants will be anonymised and any identifying information regarding themselves and other people known to them will be removed from dissemination outputs, to avoid the risk of identification.

Potential participants will be given an information sheet explaining the implications of participation, how people’s data will be used, and the benefits and possible disadvantages of taking part in the research project. A consent form will be issued to all participants to ensure they understand the implications of taking part.

Further thought will need to be given to the potential intrusion of privacy regarding the observation element of the research proposal.

Public involvement

At the beginning of the project, steering group of interested parties will be established to offer advice on the direction of the research and the proposed activities and schedule as the project progresses. The interested parties could include current or former employers of personal assistants, current or former personal assistants, disability rights campaigners, and workforce development professionals.

The research proposal is based on three data collection methods.

1. Observation - I plan to observe dyads together, to understand more about the practical interpretations and implications of person-centred care as they occur in actual care settings.

2. One-to-one interviews – participants will be interviewed individually, to gain first-hand participant accounts of person-centred care experiences, and understanding of how people perceive the concept.

3. Diary entries - participants will be asked to keep a diary of experiences relating to personal assistance, whether giving or receiving. I will supply all participants with materials for paper entries and facilitate online journal entries, using a dedicated website service. They will be allowed to choose the journal format most suitable for them.

The data-sets from the three research activities will be triangulated and analysed alongside one another. Taken together, the data from the three methods will offer a valuable window to the work of personal assistants, the needs and aspirations of their employers, and their views on a complex, ubiquitous policy concept: person-centred care.

Objective of research

The overall objective is to capture practical interpretations and perceptions of offering person-centred care to people with disabilities and chronic illnesses with the aid of personal assistants. The findings could provide insight into how people with lived experience of caring relationships involving personal assistants and individual employers interpret person-centred care as a policy concept. Knowledge of the skills relating to implementation of person-centred care, from the perspective of personal assistants and their employers, will help improve the evidence base for workforce development. The findings could be used to inform training resources aimed at personal assistants to develop awareness of person-centred care in practical contexts and the skills related to implementation. It could also lead to valuable resources for people employing personal assistants, regarding training for both themselves and the skills required by personal assistants they employ for person-centred care, and other issues relating to recruitment, managing the caring relationship, and so on.

Unanswered questions – ethics and data collection

I am inviting anyone with an interest in adult social care, older people’s issues, or people with disabilities to comment on this research proposal, either in a public comment on this blog site or privately, by email. Feedback about any aspect of the research design which may need improving is welcome.

More specifically, I am interested in people’s views on the following points.

a) ETHICS 

Ethical risks could come under the following headings: coercion, financial abuse, intrusion of privacy, and identification.

i) Coercion – the proposal intends to recruit dyads of people employing personal assistants and personal assistants themselves. In the process of recruitment, there is a risk of one party coercing the other to participate, or, if they change their minds during the research project, of continuing to participate. This behaviour carries the risk of a personal assistant or person employing them participating in the project against their own wishes, or without necessarily understanding the potential risks or implications of participation. The impact could be potentially highly distressing to a participant who, in interactions with the researcher, gives the impression of wishing to participate, yet does not actually want to do so.

ii) Financial abuse – related to point i), if one party in a dyad shares personal belongings with the other, there is a risk they could coerce the other person into participating and may try to conceal or misuse the other person’s shopping vouchers.

iii) Intrusion of privacy – the combined research activities of observation, interviews, and personal diaries could create a sense of intrusion on intensely private matters. The researcher could bear witness to discussion or enactment of personal care, relationships, sexuality, physical and mental health issues, medical treatment, and so on. Some participants may feel uncomfortable in having their personal lives analysed and discussed in minute detail during the analysis process, even if they are anonymised.

iv) Identification – there is a risk of inadvertently identifying participant/s during the dissemination process. For example, if the redaction of names and identifying details in dissemination materials is not thorough enough.

b) DATA COLLECTION

Observation - the research project proposes to carry out observation of personal assistance dyads while support is being given. Which setting would be the most ethically sound for a researcher to observe this phenomenon? I imagine visiting people’s homes and potentially witnessing personal care, such as dressing, washing, and so on, would be too intrusive. An alternative would be for the researcher to accompany the dyads on a visit to another location, away from the person’s home.

Interviews – I have proposed conducting one-to-one interviews with individual participants. By separating dyads and only interviewing people individually, I anticipate the interview will allow greater scope for free-flowing conversation between the interviewer and participant. I had considered interviewing dyads together, but was concerned about the risk of one party dominating the interview at the expense of another.

Diary entries – I am researching potential websites which could allow participants to record private diary entries and share them with the researcher.

What happens next?

Daniel will read people’s comments and engage in further conversations with interested parties. The proposal will then be revised in line with the most useful suggestions and with greater detail than is presented here. Daniel will submit a final proposal to funding bodies such as the Economic and Social Research Council, and Wellcome Trust, with a view to being selected for a postdoctoral fellowship programme.

If successful, the research project is scheduled to begin in 2025, or 2026 at the latest. Further updates will be posted on X and LinkedIn.

ENDS