Unpaid informal carers: The ‘shadow’ workforce in health care

Much of the international literature on health human resources focuses on highly trained, regulated and visible professionals with exclusionary social closure in neo-Weberian terms, such as doctors and nurses. However, researchers and policy makers are now paying more attention to the increasingly important role played by less well-trained, often unregulated, and less visible occupations such as personal support workers. Beyond these categories of paid workers exists another mostly uncharted health human resource: unpaid, little trained, largely unregulated and invisible informal carers. They include the family, friends and neighbours who provide the bulk of everyday care required to support the well being and independence of growing numbers of people facing multiple chronic health and social needs in community settings. Focusing on Canada, this chapter documents the characteristics and contributions of informal carers, and highlights the challenging realities of informal caregiving – both from the perspective of carers and policy makers considering how best to support and encourage unpaid, informal carers without driving up formal health system costs.

The interface of health support workers with the allied health professions

The chapter begins by describing the allied health workforce, before exploring from a neo-Weberian perspective the development of the support workforce associated with the allied health professions with a focus on the United Kingdom and Australia – not least by considering the reasons for introducing a support workforce, the contexts in which it is used, the negotiation of its boundaries, and the challenges and opportunities for allied health professions and its support workforce. In particular, this chapter claims that the heterogeneous allied health support workforce has evolved through two models, with different types of workers. The first is the profession-led model, which supports the neo-Weberian idea of the professional project, in which allied health professions developed support roles to expand and maintain their market monopoly and autonomy in niche areas. The second is the managerial model, which instead privileges the ‘patient-centred’ goals of increasing role flexibility by recognising and rewarding individuals’ skills and competencies and working across traditional professional and organisational boundaries. The chapter finally outlines some of the key challenges to allied health support workforce going forward.

Health professionals, support workers and the precariat

Following a neo-Weberian theoretical perspective, with reference to neo-Marxist analyses, this chapter considers the position of health support workers in the market in neo-liberal societies – with a particular focus empirically on a cross-country comparison between the United Kingdom and Canada. It discusses the role of health support workers holistically in the context of the wider range of health professionals with whom they work. Health professions themselves have been claimed in recent years to have been deprofessionalised or proletarianised. However, it is argued here that such trends are overstated and there is still typically a large gulf between the working conditions of this group of health professional occupations and those of health support workers. The latter are critically considered in terms of the recent interest in depicting such groups as the new precariat. It is argued that there is little doubt that in the United Kingdom and Canada most health support workers can be described as operating in precarious conditions. Nonetheless, doubts are raised as to whether this group will become the self-conscious and cohesive class as envisaged in neo-Marxist theory. The conclusion to the chapter highlights the policy implications of the analysis in light of current debates.

Personal support workers and the labour market

This chapter analyses the labour market for Personal Support Workers (PSWs). It focuses on Canada as an illustrative case. The literature suggests that, while it is helpful to consider the PSW labour market as a whole from a neo-Weberian perspective, it is better thought of as a series of sub-markets – comprising the hospital, long-term care, and home and community care sectors. These may differ in terms of such factors as wages, benefits, hours worked and working conditions, as well as in the socio-demographic characteristics of PSWs working in each care sector. To the extent that sectoral differences in PSW characteristics affect labour supply behaviours and outcomes – as, for example, in creating differences in the proportion of PSWs nearing retirement age – the heterogeneous nature of the PSW labour market is an important consideration in resource planning. The chapter also explores how PSWs compare to other health professions such as nursing, and makes select references to the international PSW literature in charting a forward course.

Health professionals and peer support workers in mental health settings

In many Western countries mental health care institutions employ ‘peer support workers’ in professional teams. They are clients or former clients in mental health care who are trained and educated to transform their personal experience as a client into ‘experiential knowledge’ helping other clients. This is supposed to improve ‘client centeredness’ in mental health care. However, the rise and roles of peer support workers are not undisputed; mental health professionals – psychiatrists, psychologists, nurses and therapists – have ambivalent responses. Peer support workers may challenge the status and dominance of traditional expert knowledge when they bring experiential knowledge into decision making processes. This challenge is strengthened by the development of peer support workers as a new group who may ultimately themselves professionalise. This chapter, focused on The Netherlands, explores from a neo-Weberian standpoint the relationship between mental health professionals and peer support workers. This is related to professional identities and positions, and also institutional surroundings, including how peer support workers and service organisations deal with risks and accountability. On the basis of empirical observational research, organisational conditions are shown to count more than occupational conditions. This underscores that the interweaving of new forms of knowledge in service processes must be organised.

The role of health support workers in the ageing crisis

Preparing for an adequate support and care system and for health support workers to meet the needs of the elderly in an ageing world is an urgent issue. Japan has a population with the longest life expectancy. Previously family members took care of the elderly and the disabled. However, today care is more often provided by non-family members. As a result, the long-term care insurance system was implemented. Under the system, certain services are provided by qualified professional health care staff as defined in classic neo-Weberian terms. However, to realise an appropriate quality of life for the elderly and disabled, more services are often required. This results in additional services being performed by non-professional health support workers and home helpers, which raises concerns about low-waged female labour and the practice of health and medical care by unqualified persons. However, such personalised care helps bring about a higher quality of life for the elderly and disabled, especially since educational programmes are now being provided. In this chapter, the roles of qualified and non-qualified health support workers are examined and relevant issues and their solutions are explored in a Japanese and wider global context.

Complementary and alternative medicine as an invisible health support workforce

In ageing Western societies where chronic conditions have become more prevalent, complementary and alternative medicine (CAM) practices and practitioners have performed an important role in areas such as health promotion, rehabilitation, and compassionate, preventive and palliative care. Yet collaborative partnership between CAM practitioners, other professionally qualified health care workers, and the state, has rarely materialised. By using a neo-Weberian social closure theory of the professions, this chapter examines the extent to which CAM practitioners have come to form part of an invisible and undervalued health support workforce, focusing on the interlinked societies of Brazil and Portugal. It will be suggested that CAM practitioners have resembled health support workers, especially in their statutorily unregulated status and/or subordinated role to the medical profession. In Brazil, CAM practices, but not CAM practitioners, are statutorily regulated; in Portugal, CAM practitioners, despite being statutorily regulated, remain marginalised. In this respect, CAM practitioners have been a largely invisible health support workforce, despite increasing public sympathy for their services and legitimation from the World Health Organization.

Introduction: Support workers and the health professions

The introduction highlights the growing global importance of support workers and the need for further social scientific analysis of their developing role in relation to health professions, especially in neo-liberal societies. In so doing, it provides a brief overview of the constituent chapters of the book and how they hang together, including the neo-Weberian theoretical frame of reference. This overview underlines the need for further policy consideration internationally in this area, encompassing both the public and private sector as support workers are increasingly involved in health care, in association with professionalised groups such as doctors, midwives and nurses. In this light, the introduction asks what specific regulatory policy reforms might occur to provide a higher quality support worker labour force that will enhance the protection of clients and the public and foster positive work conditions in Western societies – based on an appropriate skill mix and interface with the health professions. In so doing, it builds on the empirical research on which this collection is based within the neo-Weberian theoretical framework that binds this book together.

The management and leadership of support workers

This chapter examines from a neo-Weberian perspective the management and leadership of health and social care support workers in the United Kingdom and the wider European context. It sets out the evolution of the management and organisation of health support work consequent on the introduction of New Public Management, illustrating this with reference to the mainstream case of redefining of the professional jurisdiction of the nursing profession that occurred in the latter decades of the twentieth century. Concerns over the organisation and management of support workers under the New Public Management more recently led to a greater emphasis on professional regulation and leadership within a management discourse, under the auspices of the New Public Governance. This has resulted in a consideration of the support workers becoming more professionalised, or semi-professionalised, as a means of ensuring effective management by recruiting support workers with the appropriate values in a process of ‘responsibilisation’.

Regulation, risk and health support work

The limited regulation of support workers as compared to health professional workers and the ensuing risks are discussed in this chapter from a neo-Weberian standpoint. It is argued from the example of the United Kingdom, and especially England, that it may be in the public interest, in terms of protecting users of services and their carers from harm, to extend the existing regulatory framework in a number of modern societies. This is particularly so at a time when health professions themselves are coming under increasing challenge in the wake of adverse events and the subsequent publicity to which they have been exposed. The range of actions taken to mitigate risk include extending state regulatory controls, establishing registers for additional occupations, increasing employer and professional managerial controls in the public and private sector, and implementing additional requirements for continuing educational development. Health support workers, who are numerically the largest group of health personnel, remain under regulated and under researched. Regulatory confusion too often prevails in the complex division of labour in health care in relation to the risks of support workers to users – not to mention vulnerable support workers themselves in terms of their precarious work conditions, as discussed elsewhere in this volume.