Received date: 16 January 2012 Accepted date: 30 April 2012
Little is known about those employed to support family carers of disabled people or those with longterm care needs. The term ‘carer’ is used in England to refer to family members and others who provide unpaid regular and substantial support to adults with disabilities, including older people and others unable to live independently. Among the wider social care workforce some staff are employed to provide support for these carers, but little is known about the composition and characteristics of this group of staff. The findings reported in this article are derived from quantitative secondary analysis of the National Minimum Data Set for Social Care (NMDS-SC; n = 499 034), which collects data from social care employers and reports to Skills for Care. This data set includes information about the characteristics of the workforce employed to support carers and the organisations that employ them to do so. Our analysis showed that this support workforce is mostly female, with a large number of part-time employees who are based in organisations with significantly higher turnover and vacancy rates than other organisations which provide social care. Staff who support family carers appear to be better qualified and to have longer experience within the care sector than other social care workers. From these findings we conclude that this support workforce may be affected by staff shortages themselves, and that high staff turnover rates may undermine the continuity of support given to family carers, leading to problems for existing staff. We argue that developing the potential of social care staff to support family carers requires specific attention from social care employers and policy makers.
• Surprisingly little is known about social care staff whose roles, in full or in part, are to support family carers.
• Policy makers are increasingly interested in supporting family carers.
• Some family carers express concern that services do not provide them with adequate support.
• Staff whose job involves providing support for family carers are mainly employed in home care services.
• The analysis suggests that the lack of continuity of relationships with practitioners reported by some family carers may be due to high rates of staff turnover in home care services as a whole.
• Efforts to develop the potential of social care staff to support family carers require specific attention from social care employers and policy makers.
family carers, home care services, policy makers, social care staff, staff turnover
In the UK, the term carer is used to refer to family members, neighbours or friends who provide longterm or substantial and regular care for an individual who needs help with daily living activities such as washing, dressing and shopping (see Box 1). It is increasingly recognised that such carers make a considerable contribution to society as well as to the support of their family members. It is also recognised that being a carer may be demanding and exhausting, and so, in England as in many other countries, sustained policy attention is being given to how to meet carers’ own needs and respond to their diverse wishes and circumstances (HM Government, 2008, 2010).
There have been considerable developments across the globe in quantifying the numbers of carers, their economic contribution to society, their wishes and needs, and participation in different types of caring activities (Hollander et al, 2009). One of the ways in which publicly funded services in the UK help to meet carers’ own needs is through the employment of social care workers and other staff whose roles include support for carers.
However, many policy pronouncements appear to take for granted the presence of practitioners who are expert in providing support for family carers, and appear to consider that skills in supporting them are interchangeable with skills in supporting social care recipients directly. This lack of attention to what might be the skills needed to work with family carers may stem from several causes, including the scant knowledge of social care work in general, focusing on staff working in residential facilities, such as care homes and hospitals, and difficulty in establishing whether care work meets the (possibly separate) needs of carers as well as those of disabled older people (Parker and Clarke, 2002). Moreover, the focus on people with high-level needs or who are at crisis point, sometimes as a result of having no one available or willing to act as a carer, or difficulties in sustaining the amount of family support needed (Audit Commission, 2004), may cast family carers support in the shade. Nonetheless, there are numerous examples of social care roles and activities that are designed to support family carers, and most require a workforce to deliver them. A recent systematic review of interventions that support family carers in the UK included:
those concerned with supporting carers to access services; those targeted at carers’ physical health; interventions focused upon emotional and social support; education and training for carers; employment-related interventions; and carer breaks.
(Victor, 2009, p. 1)
This limited knowledge of staff support for carers may make it hard to build up a workforce that has the skills and experience necessary to respond to family carers’ own concerns. For example, there are consistent complaints that some do not regard their relationship with practitioners as supportive, but it is less clear to whom these criticisms specifically apply:
carers can often feel excluded by clinicians – both health and social care professionals should respect, inform and involve carers more as expert partners in care.
(HM Government, 2010, p. 6)
There is some evidence that some family carers think that some paid home care workers provide poorquality care or are unsupportive. This can be counter- productive, because family carers may then feel more stressed, or may insist on checking on home care workers’ activities, rather than taking the break or respite that is on offer (Piercy and Dunkley, 2004). Such studies do not generally report family carers’ views on the ways in which workers are supposed to be supporting them (see, for example, Patmore and McNulty, 2005).
The importance of gaining better knowledge of staff supporting family carers is further predicated on demographic trends, such as the ageing of the population, and the anticipated need for more carers, among whom will be individuals who are possibly in need of support themselves, such as older frail partners (Pickard et al, 2007). Some training materials have acknowledged the need for staff to have a dual focus on carers and on disabled people:
Principle 6: Respect carers’ own needs, rights and aspirations, which may be different from those of the person being supported.
(Skills for Care, 2010)
Despite the perceptions of some family carers that they are isolated or taken for granted (HM Government, 2010), many have constructive and supportive relationships with those who are employed to care for their disabled relative or friend (e.g. as home care workers or day services staff). A systematic review of the literature by Arksey et al (2002), which covers the support of carers of people with mental health problems, located four studies of home care support that encompassed family carers as well as the older person with dementia (the user group in all of the studies). They found evidence that home care workers can postpone or reduce permanent placement in longterm care facilities (care homes), may help with overall coping, and may reduce perceived levels of family carer burden.
In practice, therefore, staff who support family carers include many practitioners who support older and disabled people, and not just those with explicit roles in supporting carers. However, surprisingly little is known about these staff whose roles, in full or in part, are to support family carers. The impetus for knowing more may be considered at three levels of questioning, namely the need to understand what works in practice for family carers and care workers, the need to improve systems of support for family carers by knowing more about workforce pressures and dynamics, and the need to know how resources (of which employment and managerial costs are significant) can be better utilised. Underpinning this lie questions about choices between models of carer support developed by Twigg and Atkin (1994) and articulated in the revised government Carers’ Strategy in England (HM Government, 2010), in which family carers are conceptualised as partners with staff (see also Association of Directors of Adult Social Services, 2010). Lack of clarity about underpinning models, for example, whether carers are seen as partners or coclients, complicates debate about their capacity and effectiveness, since different models are predicated on different ideal-type relationships. This gives rise to questions such as whether the interests of family carers and disabled people converge or diverge.
This article draws on the analysis of a new large national data set on the social care workforce in England, namely the National Minimum Data Set for Social Care (NMDS-SC). Using this employerprovided anonymised data about individual workers, the aim of this article is to examine the profile of the sections of this workforce that are employed to work with family carers and, by drawing a picture of their characteristics, to begin to answer some of the questions identified above. We set this profile in the context of the known characteristics of the overall social care workforce (see Box 2), using a range of descriptive and bivariate analyses with suitable statistical tests. In this analysis we use the term disabled adults to refer to adults of all ages, although the great majority are older people, and this includes people with mental health problems, learning disabilities (intellectual impairment), and those who may be ill or frail. Again, for reasons of space, we shall refer to carers as family members, mindful of the fact that some carers are not family members but friends, same-sex partners or neighbours (Manthorpe and Price, 2006). Although some evidence exists about the potential benefits of practitioners specifically termed carers support workers as an intervention (Victor, 2009), these are a small section of the workforce. Furthermore, because such job titles are used variously and inconsistently in the UK (Manthorpe et al, 2010a), this article investigates the wider social care workforce and is not restricted to specific job titles.
The NMDS-SC consists of returns from social care employers who are requested by the sector skills council, Skills for Care, to complete two main files. The first file, called the provisional data file, relates to their organisation as a whole and provides aggregate information on the total number of staff employed in different job roles, the overall number of leavers during the previous 12 months, and other information. Employers then provide more detailed information on all, or a sample, of their staff, the individual workers’ file. The data explored in this article are from the detailed individual workers’ files (June 2010), but we have linked these data to information provided in the provisional data file, with the aim of investigating factors such as size of employing organisation, overall turnover and vacancy rates in the organisation, type of main service provided and sector, that is, statutory, voluntary (not for profit) or private (commercial) sector. This is a huge data set, with data relating to 24 301 employers who had provided details on 499 034 individual employees, with over 75% of these records updated during the previous 12 months. It should be noted, however, that currently the NMDS-SC underrepresents the statutory sector (local government) and over-represents the independent sector (private and voluntary sectors, which are the main providers of adult social care in England). Similarly, it may underrepresent ‘micro’-employers (mainly people who employ their own care workers); for a fuller discussion of these limitations and their implications, see Hussein (2009, 2010). Nevertheless, the NMDS-SC is the most comprehensive data set covering the social care workforce in England.
The analysis commenced by exploring the proportion of social care employers who describe support for family carers as their main activity or support for carers as part of their wider services. Employers provided information on their total (aggregate) number of permanent and temporary workers in the NMDS-SC provisional file, which enabled exploration of the percentage of staff supporting carers among aggregate workers reported in the NMDS-SC. The detailed information on some (or all, in some organisations) workers in the NMDS-SC individual workers’ file was then focused upon because this provides personal and workplace characteristics. Social care support for family carers in England is usually provided by organisations such as home care agencies offering services to disabled adults, so we examined the profile of individual staffworking in organisations that provide support for family carers exclusively or as part of their services. Although theNMDS-SC includes information on organisations that provide services for family carers (generally parents) of children and young people, we did not include them as part of the current analysis. Thus we focused on social care services for adults and their paid employees, not volunteers or kin. Statistical analyses exploring the profile of social care staff supporting family carers and comparing them with other social care staff were performed using R Statistical Environment (version 2.1; R Development Core Team, 2009).
Although current returns of the NMDS-SC do not form a census of the entire social care workforce in England, they provide information on 54.5% of all Care Quality Commission (CQC)-registered social care providers, and an additional 10 661 non-CQCregistered providers. The latter group includes organisations that do not provide personal care, such as community (voluntary and private sector) day care, some residential services such as hostels and sheltered housing, and some domiciliary care services that offer various support services (e.g. shopping) but do not offer personal care (generally defined as help with washing, eating or toileting). It is likely that the staff of these organisations also provide family carers with support, for example, advice services, daytime support and household maintenance. The current limits of the coverage of the NMDS-SC should be noted, but the strength of the data lies in their unprecedented and unparalleled coverage of the disparate English social care sector.
Employers identified the main service that they provided from a pre-coded list of possible services. They then listed all of the services that they provided. In this analysis, among the 24 301 employers who completed the NMDS-SC, only 0.4% (n = 97) indicated that their main service was to support family carers, but when considering those who provided services for them as their main or additional service, this proportion increased to 8.5% (n = 2064) of employers. Using the aggregate data we calculated the proportion of those staff working for employers whose main services were support for family carers, and then calculated the proportion of those working with providers of any services to family carers.
Of the total number of workers (n = 92 864), only 0.4%worked in organisations which stated that family carers’ support was their main service, while 13.1% worked in organisations that provided support for family carers among their activities (any carer service). These findings were expected, given that few organisations, such as Carers’ Centres, solely provide support for family carers, because such support is usually only a part of what many social care organisations offer (e.g. staff in a home care agency may work for many clients, but not all of their clients will have carers).
Employers provided detailed information about 46 274 of the total of 92 864 staff in organisations that provided any services for carers. By comparing the detailed profile of these 46 274 staff with the rest of the workforce (e.g. those care home workers who were not recorded as providing services for carers), whom we identified through the NMDS-SC individual data file, possible differentials covering personal, job and organisational characteristics were explored.
In total, 8% (n = 40 450) of workers were employed in organisations that provided services for carers of older people, and 7% (n = 34 782) were employed in organisations that provided services for carers of other disabled adults (excluding children). However, this is not a strict demarcation, as the same individuals were working with the family carers of adults and/or older people. Overall, 9.3% (n = 46 274) were working in organisations that provided services for any carers (of adults or older people), while 5.8% (n = 28 944) worked in organisations that provided services for both carers of adults and those of older people. We will focus on the 9.3% and investigate their characteristics further, and hereafter refer to this group as staff supporting carers.
Like the rest of the social care workforce, the majority of people employed to support family carers were direct care workers (63.6% among the carers’ workforce and 57.6% among the rest of the workforce). However, there were fewer senior care workers (4.9%) compared with the rest of the workforce (7.1%). Similarly, there were fewer registered nurses (2.8%, compared with 4.4%), possibly due to the nature of community nursing services. In England, primary care or community-based nursing is part of the National Health Service (NHS) and not social care services. Another clear difference in job roles related to those of ancillary staff and other non-care-providing staff. Only 3.6% of the carers’ workforce were ancillary staff, compared with 8% among the rest of the workforce.
Differences with regard to specific main job roles were reflected in the grouped job roles (see Box 3). Around 75% of staff supporting family carers had direct care roles as their main jobs, being care workers, senior care workers or support workers, compared with 71% of the rest of the care workforce. Similar proportions (9%) performed managerial or supervisory roles as their main jobs, and similar proportions of 6% each undertook professional roles, such as social work or occupational therapy. However, the workforce contained proportionally fewer staff whose main jobs were non-care-related (or ‘other’) jobs, such as administrative and ancillary jobs. These differences are statistically significant (2=664.1; P < 0.001). The reason for this may lie in their main occupational sector; many are home care workers for whom overall supervisory, administrative and managerial roles are thinly spread (Sims-Gould andMartin-Matthews, 2010). For example, home care workers are not generally responsible for medication, nursing procedures, or the administration of facilities and equipment.
Most staff (82.5%) supporting carers held permanent contracts of employment, but this proportion was significantly lower than that for the rest of the care workforce (88.6%); (2 = 3350.2; P < 0.001). The percentage of agency workers (those not employed directly but working for employment agencies) was also relatively higher among staff supporting carers in comparison with the rest of the social care workforce (4.8% vs. 1.2%). Full-time and part-time employment patterns were much the same among staff supporting carers and the rest of the care workforce. Around 40% of each group worked part-time and 46–49% worked full-time (the rest generally had flexible working arrangements).
Table 1 shows that the average age of staff supporting carers was almost identical to that of ‘other’ workers (i.e. care workers identified through the NMDS-SC individual workers’ files as working in organisations that do not provide services for carers of adults or older people). However, a higher proportion of women were found among the staff supporting carers (2 = 200.8; P < 0.001). Similarly, the ethnic profile of staff supporting carers differed slightly but significantly from that of the rest of the care workforce (2 = 239.7; P < 0.001), with slightly more being ‘white.’ Proportionally significantly fewer staff supporting carers were disabled compared with the rest of the care workforce (1.8% vs. 2.3%; 2 = 33.0; P < 0.001).
At the beginning of 2010 the NMDS-SC started to collect data on nationality and country of birth of workers, and by the end of that year employers had provided this information for 89 437 individual workers, of whom we identified 8492 as supporting carers. Using these initial returns, staff supporting carers appeared to represent proportionally fewer overseas or non-British workers, with 14.4% identified as non-British, compared with 17.5% among the rest of the workforce (2 = 53.3; P < 0.001). This is likely to be because many care workers from the Philippines, and other countries from which people are recruitedtowork in theUKcare sector, are employed in care homes as senior care workers or nurses, having been grantedimmigration permission to work in these shortage occupations (Hussein et al, 2010).
Employers provided specific information on the highest-level qualification that each worker held and whether members of staff were working towards any qualifications. However, this information included a large number of missing values. For this reason, among others, Skills for Care introduced further questions specifically asking whether an individual worker had ‘no qualification’ or was not working towards any qualification. These data items were only introduced during 2010, and were completed by a relatively small number of employers, so they are used only for indicative purposes here. Employers reported that around 11% of staff supporting carers had no qualifications, and a further 10% were not working towards any qualifications. These proportions are not significantly different to those among the rest of the care workforce (2 = 3.82 vs. 0.25, respectively; P = 0.06 vs. 0.61, respectively).
With regard to highest qualification level, proportionally and significantly more staff supporting carers held National Vocational Qualification (NVQ) level 2/2+ qualifications, and at the higher level NVQ 4/4+ (46% vs. 38.8% and 16.8% vs. 12.9%, respectively), than the rest of the workforce. On the other hand, relatively fewer staff supporting carers held higher level 3/3+ qualifications (22.7% vs. 29.4%). A similar concentration around level 2/2+ qualifications was reported in terms of qualifications being worked towards, where 56.5% of staff supporting carers were working towards level 2/2+, compared with 42.7% of the rest of the workforce. Employers indicated that 74% of staff supporting carers had completed an induction period. This was significantly higher than the figure of 68.6% reported among the rest of the workforce (2 = 302.9; P < 0.001).
Information on sources of recruitment was provided for 37% of all detailed individual records (n = 186 788). Staff supporting carers appeared to attract or recruit fewer people who had not been previously employed (2.5% vs. 4%) or were from outside the UK (1.1% vs. 3.1%), compared with the rest of the care workforce. This may be directly linked to the type of job roles performed by staff supporting carers. For example, with regard to recruiting from outside the UK, staff supporting carers were less likely to be nurses. One reason for this may be that most nurses in social care work are employed in care home settings, which are less likely to describe themselves as supporting carers, as indicated in the next section.
The majority of staff supporting carers (54%) worked for organisations whose main business was domiciliary care (home care), in contrast to the rest of the workforce, where the majority of staff worked for organisations that provided residential care (59%). In terms of the main service provided, over 50% of staff supporting carers were employed in organisations that provided home care services, compared with only 20.5% of the rest of the workforce. After that, 20% of staff supporting carers were mainly employed in care homes, with or without nursing services on site. A significant minority of staff supporting carers (4.7%) worked for organisations providing social work and care management services, consistent with the requirements for local government social services departments to provide assessments for carers and to support them (Seddon et al, 2007). The distribution indicated that less than 3% of staff supporting carers were employed in day care services, and only around 2% in organisations offering mainly carers’ support, such as not-for-profit Carers’ Centres.
As with the rest of the social care workforce, the majority of staff supporting carers were employed in the private (commercial) sector (63.5% vs. 63.3%), followed by the not-for-profit voluntary or third sector (around 16%). A further 17.5% of staff supporting carers and 16.8% of the rest of the workforce were employed in the statutory, local government sector, but these differences were not significant. However, staff supporting carers appeared to be more concentrated within organisations with higher mean vacancy rates (3.94%, compared with 2.39% for the rest of the workforce). Also the standard deviation was higher for the group of staff supporting carers, but the difference was not as wide as that observed for the mean turnover rate. Table 2 shows that staff supporting carers were, on average, working for organisations which have higher staff turnover rates than the rest of the care sector.
This analysis rests on a broad definition of staff supporting carers. We adopted an inclusive definition because the main services identified as providing support for carers were proportionally very few. Furthermore, it is likely that carers receiving services from self-declared carers’ services, such as a Carers’ Centre, may also be in contact with staff working in services directly related to the people for whom they care, particularly home care services. Developments in care homes also indicate the benefits to their staff of forming relationships with families, or former carers. This may meet carers’ needs for support, and may also improve the quality of life for care home residents (Nolan et al, 2003; Woods et al, 2007). However, our analysis shows that few care home managers at present appear to report that the staff whom they employ are providing support for residents’ family carers.
This preliminary analysis of the profile of people working in social care services and providing support for carers in England suggests, at first glance, that they tend to be better qualified than other workers, but this relates to their being significantly more likely to have completed their induction period of initial orientation than others. This is not a matter for congratulation. In fact it exposes the very low levels of training among social care workers overall, and the failure to meet even the lowest of the NVQ target levels set by the government as minimum standards for the sector, despite expressions of general support (Gospel and Lewis, 2011). Overall there is still a lack of qualifications, and possibly low expectations that social care workers are able to benefit from training and skills development. This may put support for family carers and the wider social care sector at a disadvantage in responding to demographic change and higher levels of disability among older people in community settings, especially at the end of life (Wild et al, 2010; Exley and Allen, 2007). This disadvantage may also be related to the low status of home carework in England, where extra training leads to little or no extra remuneration, and may even be seen as inappropriate or unnecessary by staff themselves (Moriarty et al, 2010), many of whom, as the data show, have worked previously in this sector. An analysis of the profile of home care aides in the USA also revealed that these workers tend to be older and to have a lower level of education than other types of aides working in nursing homes or hospitals (Crown et al, 1995). In the USA, too, the long-term care sector, at home and in care homes, is characterised by low pay and few employment benefits for its workers (Yamada, 2002; Harris- Kojetin et al, 2004).
Three unexpected findings in this analysis merit further exploration. First, the workforce supporting carers seems to be less diverse in terms of ethnicity. This reflects the fact that so few people from Asian ethnicities work in home care settings in the UK. White and black African/black British populations receiving care services for themselves or for others in later life may be able to choose care workers from similar cultural backgrounds, but this may not extend to all minority groups. This finding suggests the continued importance of communication and other training for social care staff of all ethnicities in addressing cultural and equalities issues (Manthorpe et al, 2010b), especially in less diverse communities. However, in other developed countries there is substantial ethnic diversity among home care workers (Montgomery et al, 2005), so this profile may not be fixed. Far more difficult to change may be the female dominance with regard to caregiving and the entire social care workforce (Vector Research, 2009).
Secondly, staff supporting carers were more likely to be agency or temporary workers, again reflecting the employment profile of home care workers to meet the peaks and troughs of demand. High turnover in some agencies may cause some distress to people using home care services and their relatives (Woodward, 2004; Devlin and McIlfatrick, 2009). If staff supporting carers are working in organisations that have higher staff turnover rates than the rest of the sector, it is hardly surprising that lack of continuity of care features in carers’ complaints. Therefore the solution to this lies not merely in training the workforce, but in other developments in the sector to reduce turnover and increase retention (as reviewed in the USA by Wiener et al, 2009). This point seems to be confirmed by the small amount of evidence fromstaff supporting carers themselves in the UK. In one of the few qualitative studies of staff supporting carers, seven support workers for disabled people and their families reported that they viewed their work as personally rewarding (Ryan et al, 2004), to the extent that some staff perceived themselves as ‘part of the family’ because they were so close to disabled people and their caring relatives.
Finally, Parker et al (2009, p. 60) have argued that it is important to look more closely at different types of carers, and note the dominance of studies of certain conditions in the wider health research literature. This may cloud differences in levels and types of professional roles in supporting, informing and liaising with carers and the frequent professional encounters with home care and other staff working in domestic settings. Parker et al (2009) concluded that there seem to be a myriad of influences on carers’ experiences and views of staff, such as:
the nature and trajectory of the patient’s condition; their understanding of the patient’s illness and ways of managing it; the patient’s family structure and dynamics; the structure of services; carers’ access to and use of social and external support; their relationships with professionals, and their relationship with the patient.
Sims-Gould and Martin-Matthews (2008) have similarly highlighted the complexities of caregiving and the need to think further about who helps whom in their study of home care workers in Canada.
Rather than restrict the definition of staff supporting carers to people working in organisations that explicitly provide mainly carers’ support, such as Carers’ Centres, we included those working in organisations providing any services to carers in our analysis of the NMDS-SC. This, we argue, has the potential to expand our conceptualisation of staff supporting carers and to see home care and care home work as being part of a complex set of relationships if carers are present. We suggest that understanding of social care work and labour should move beyond its current main focus on care homes to the wider home care sector, where professional practice engages with diverse day-to-day activities, domestic patterns and relationships. In future, in England, there are also likely to be changes arising from the adoption of personalisation (i.e. social care funds provided directly to disabled people or their carers), which means that those carers may have a greater influence on the direct employment of care workers and indeed may wish to be paid themselves or pay other members of their family to care for a disabled family member (Manthorpe et al, 2011). In addition, although many social care employers do not describe themselves as providing services for carers, possibly because some clients may not have carers or family members, this is not the case for all of them. We would anticipate that more social care providers will see that working with family members could become part of their commitment to person-centred or relationship- based care.
This analysis has raised the possibility that the lack of continuity of relationshipswith professionals reported by some carers may be due to high staff turnover in home care services as a whole. One solution to this may lie in carers employing their own staff to care for their relatives through personalisation, or in carers reaching agreement with care providers that continuity of care will be a way of knowing whether good outcomes are being met (i.e. a quality indicator). Investigation of this large data set of social care workers has provided new opportunities to think about the diverse characteristics of staff supporting carers. It may be potentially useful to those seeking to improve support for carers by enhancing the skills of staff supporting carers, to consider issues of their diversity, and to help social care services overall to meet the needs of carers and people who need care and support.
We are grateful to Skills for Care for providing the latest NMDS-SC data files, and to Analytical Research Ltd for quantitative and analytical support. The overall analysis of the NMDS-SC is funded under the Department of Health Policy Research Programme support for the Social Care Workforce Research Unit at King’s College London. This article was produced as part of background work for the NIHR School for Social Care Research funded study of Carers’ Workers. The views expressed in this article are those of the authors alone, and should not necessarily be interpreted as those of the Department of Health, Skills for Care, or the NIHR School for Social Care Research.