Service-User Research in Health and Social Care

Hugh McLaughlin

• Publisher: SAGE Publications Ltd
• Year: 2009
• ISBN:
  9781446244951
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Metodologia e ricerca nelle scienze sociali

This book represents a major contribution to the development and increasingly accepted importance of involving service users in research. It argues that this development is neither a fad nor a cure-all, and highlights the strengths, weaknesses, benefits and costs of the approach.

It is the first text to analyze the involvement of service users from the conception of a research idea to the finish of the project. The author critically considers why service users even bother getting involved, and goes on to explore ethical issues, covering key topics such as:

- the practice of service-user research; research conception, recruitment, training, development of research tools, data collection, analysis, writing up, dissemination and endings

- barriers to involvement and the limitations of service-user research, with

practical advice on how these can be addressed

- both sameness and difference in relation to involving young people in

research

- alternative futures for involving service users in research.

Using reflexive questions and practical examples to challenge the reader to consider his/her own position in relation to these issues, this book should occupy a central place on the shelves of all undergraduate health and social welfare students. It is also crucial reading for those studying postgraduate professional qualifications and research methods, and for practitioner researchers and policy staff considering the best ways of undertaking meaningful service user involvement.

1	The Development of Service User Involvement in Health and Social Care Research

Introduction

This book aims to provide the reader with a clear introduction to the rationale, costs and benefits, ethical considerations, ontological, epistemological, practicalities and critical issues in involving service users in research. Throughout the book you will find boxes, like the one below, which ask you to reflect on your understanding of the issues being considered. You may want to record your responses to chart your understanding of the issues as they develop throughout the book’s journey.

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Reflexive Questions

• When people talk of service users, what does this conjure up for you?
• What do you understand as involvement and what do you understand by the term research?

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These critical issues, as you will find out, are contentious and will be visited and re-visited as we proceed through the book, unpicking assumptions, challenging received wisdoms and developing our awareness of the issues involved. By the end of the book it is intended that the reader will be able to critically assess where service user involvement would be beneficial, identify the strengths and weaknesses of such an approach, be able to justify a decision to include or exclude service users in research, identify the nature and limitations of service user knowledge claims and be able to critically evaluate other researchers’ attempts at involving service users.

To begin our journey this chapter charts the development of service user involvement in policy, practice and research, exploring what we mean by health and social care, ‘service users’ and identifying the book’s structure and organization.

Context of service user involvement

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Beresford (2005), a key figure in involving service users in policy, education and research, rightly observes that we cannot begin to understand service user involvement in research without first considering user involvement more generally. He notes that there has been a growing and strengthening interest in the development of service user involvement in health and social care policy and planning since the 1980s. However, the development of service user involvement in research has been slower to develop. It is also worth noting that the development of service user involvement has been an international phenomenon, with ideas from other countries such as the USA, with its tradition of civil rights, and the developments in the Netherlands influencing the direction in the UK (Warren, 2007).

The Conservative governments of Thatcher and Major had been keen to reduce the power of professionals who were viewed as operating health and social care services for their own ends and wanted to move towards more customer centred organizations run by professional managers. Following the election of the Labour government in 1997 this trajectory was further enhanced with the introduction of the modernization thesis. Modernization (Department of Health, 1998a) is viewed as the necessary process for updating public services, including health and social care, to match the expectations of the modern day consumer. As such, it maintained the Conservatives’ attack on provider dominance whilst promoting business solutions to social policy problems and sharpening accountability (Newman, 2000). Modernization emphasized the importance of developing partnerships (Balloch and Taylor, 2001) and taking user involvement seriously, as well as requiring agencies to work with, and develop partnerships with those for whom they provided services. This emphasis on service user partnerships and involvement can be seen in a range of government publications, including Department of Health, 1998a, 2000a, 2000b, 2005; NHS Executive, 1999; and in the range of national service frameworks, for example, mental health, older people, children (Department of Health, 1999, 2001b; Department of Health and Department for Education and Skills, 2004) and the Valuing People strategy for people with learning difficulties (Department of Health, 2001c). In a more recent initiative the government has been establishing local involvement networks (LINks) in adult services whose remit includes the encouragement and support of local people to become involved in how local health and social care services are planned and run (Department of Health, 2007a). Importantly, LINks will look at all health and social care services within a geographical area irrespective of whether they are provided by the NHS, a local authority, a private company, a social enterprise or a charity. LINks will also have the right of entry to a range of services to examine what they do. It is too early to know whether LINks will be effective or not, but they represent an attempt to bridge the normal health and social divide whilst promoting public involvement.

The UK government has been keen to promote service user and carer involvement in social policy and service development, but this has often been more a question of ideology rather than one of definitive evidence. Crawford et al. (2002) have identified that the involvement of patients has contributed to the changes in the provision of services across a range of settings, but there is little evidence as to how these changes have impacted upon the quality of care or the health of patients. Simpson and O’House (2002: 1265), in a systematic review, identified five randomized control trials and seven other comparative studies, mainly involving studies in the United States of America, whereby they concluded that:

users can be involved as employees, trainers, or researchers without detrimental effect. Involving users with severe mental disorders in the delivery and evaluation of services is feasible.

This is hardly a ringing endorsement for the involvement of service users and carers and the situation is not very different within the social care field where a Social Care Institute for Excellence (SCIE) review stated:

Efforts to involve people in the planning and development of services they use are taking place across the UK. However, the impact of that participation on the change and improvement of social care services is yet to be properly monitored and evaluated. (Carr, 2004: v)

The position within health and social care on the involvement of service users and carers in the social policy and service development is that it is a widely supported and welcomed development, but there remains little evidence to back this support in relation to improving health or social care outcomes.

Alongside these developments in social policy there have been similar developments in education and training in health and social care. These have included the representation of service users and carers on the management committee of the General Social Care Council (GSCC) (Hasler, 2003), involvement in the development and the approval of health care professions (Health Professions Council, 2003), nursing (Nursing and Midwifery Council, 2004), social work courses at pre-and post-qualifying levels (Department of Health, 2002; GSSC, 2005) and the involvement of service users and cares in the planning and delivery of health and social care education (Hanson and Mitchell, 2001; Citizens as Trainers, 2004; McGarry and Thom, 2004; Bassett et al., 2006; Beresford et al., 2006). This is not to say that involving service users in education and training is not without its difficulties. Bassett et al. (2006) and Tyler (2006) rightly observe there are a number of potential barriers to involvement, including gaining access, lack of time for preparation, academic jargon, emphasis upon academic knowledge, individualized nature of higher education, discrimination and payment systems. Many of these reasons, as we will see later, are reflected in the barriers to involving service users and carers in research.

Democratic approach

Alongside this development of service user involvement from the managerialist perspective in social policy and education there has also been a significant strand of development from what Beresford (2005) describes as the democratic approach. This approach is intimately linked with the personal experience of service users and carers who, having experienced services, want to have a greater say in how services are configured and delivered so that they can have a greater say in controlling their own lives (Beresford and Croft, 1996). This democratic approach implies a redistribution of power. This is something that it is not included with the more managerialist approach, which is about effectiveness, efficiency and economy with no suggestion that those with power should either seek to share or relinquish their power bases. In fact it could be argued that the opposite is true whereby service user and carer involvement is seen to establish credibility or to provide a managerial mandate.

The development of the democratic approach can be seen in the development of the disability movement and their response to Le Court, Cheshire Home (Barnes and Mercer, 1997). The disabled residents of this residential home asked expert researchers Miller and Gwynne (1972) to support them in taking greater control of their everyday lives. The researchers quickly alienated the residents, rejected their complaints and produced a report after three years recommending a re-working of traditional approaches. The residents felt betrayed and several of them later helped to establish the Union of Physically Impaired Against Segregation (UPIAS) in 1976. UPIAS became central to the development of the social model of disability, critiquing experts and professionals who claimed to speak on the behalf of disabled people who, in UPIAS’s opinion, only pursued their own interests:

We as a Union are not interested in descriptions of how awful it is to be disabled. What we are interested in is the ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top of our physical impairments by the way this society is organised to exclude us. (UPIAS, 1976)

This early concern by the disability movement was later taken up those with mental health difficulties and learning disabilities. More recently Wilson and Beresford (2000) have accused professionals of:

• appropriating user’s knowledge;
• using and reinforcing inherently oppressive knowledge about service users, for example, a bio-medical model of madness and distress;
• reinforcing constructions of ‘clients’ as passive and low status by controlling the ideas of ‘anti-oppressive practice’ and knowledge of ‘oppression’;
• mirroring and masking traditional professional power;
• providing continued legitimation for controlling and problematic social work practice. (Wilson and Beresford, 2000: 569– 70)

The democratic approach represents an alternative but significant discourse, challenging the orthodoxy of the managerialist approach whose power to describe and classify is often left unquestioned.

Health and social care

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At this stage it is helpful to clarify some key terms and we will begin by examining what is meant by health and social care.

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Reflexive Questions

• What do you think about when someone talks about health and social care? Specifically, who are the people/professions you normally refer to when you think of health and social care?

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Health and social care are major employers in the UK with an identified workforce of 1.3 million employed in the NHS in 2006 (http://www.ic.nhs.uk/webfiles/publications/nhsstaff2006/NHS%20Staff%20leaflet.pdf accessed 9 March 2008) and 1.83 million in social care (http://www.socialcaring.co.uk/index.php?option=com_content&task=view&id=10&Itemid=8 accessed 9 March 2008). As such, health and social care have a substantive impact on the UK economy, not only by the nature of their tasks but also as major employers.

When you considered the first part of this question you might have included health workers as being all those people who are employed by the health service and private health care agencies; for social care those employed by local authorities, voluntary or private agencies to deliver care to promote individuals’ welfare. Those involved in health care include: doctors, nurses, radiographers, midwives, health visitors, district nurses, dentists, psychologists, physiotherapists, dieticians, public health experts, occupational therapists and community psychiatric nurses. Their workplaces are normally associated with hospitals, GP surgeries or health centres. However, where do the chiropractors or complementary medicines fit in, and what do we mean by health? Downie and Telfer (1980), in a philosophical exploration of health and social work, saw health not as one but as two oppositions, that is between health and disease or illness on the one hand, and between good and poor health on the other. In their view illness or disease is seen as an episode, interrupting health which will later be restored when the illness or disease has passed. Poor health, on the other hand, suggests a long-lasting disposition to regularly being or becoming ill. A healthy person, by contrast, is someone who does not suffer from poor health and may even be described as normally healthy, even when they are ill. There are, however, clear cases where poor health is not due to disease or an illness but to some other factor, such as a defective heart or malnutrition.

Traditionally medicine has been more concerned with disease than with health. For most medical professionals disease has been conceptualized in biomedical terms as a deviation from the norm: the normal peak flow capacity of our lungs or normal blood pressure. However, having a disease does not necessarily mean that you would feel ill. High blood pressure, not caused by any particular disorder, if when found on examination would be diagnosed as a ‘disease’ even though the patient would not be aware that they were ‘ill’. Blood pressures are measured over a continuum and will vary over time and there is no clear-cut unambiguous high blood pressure that presents a threat to health.

In fact, there are differences even between European countries in terms of treatment for blood pressure. In Germany, for instance, low blood pressure is taken seriously as a ‘disease’ and widely treated, because it is seen as responsible for such problems as chronic fatigue. In Britain, few doctors would treat low blood pressure as a ‘disease’. (Marsh and Keating, 2006: 392)

Similarly, patients may suffer from an illness without an identifiable ‘disease’. A large number of people who visit their general practitioner suffer with symptoms such as tiredness or nausea which cannot be diagnosed as caused by an illness. This is further complicated by debates over the realities of conditions such as attention deficit hyperacti...