El Enany, Nellie
(2013)
Service user involvement in healthcare service development: knowledge, representativeness & the 'professional' user.
PhD thesis, University of Nottingham.
Abstract
Policy makers have increasingly regarded user involvement as an important dimension of service development. Current government policy advocates the involvement of service users in healthcare service development across all levels of an organisation, ranging from the level of individual service user to the development and improvement of health services (DoH 1992, 1999, 2001a, 2001b, 2003a, 2003b, 2004, 2005a, 2007a, 2007b, 201Oa, 201Ob, 2011, 2012). This has manifested in the creation of a number of public and patient involvement initiatives including Patient Advocacy and Liaison Services (PALS), Locals Involvement Networks (LINks), Patients Forums and more recently Healthwatch Organisations. User movements and policy pressures have also led to the formation of user led groups pushing for changes in health and social care. However, these groups often operate on the margins, and as such, lack the legitimacy to work alongside professionals in service development and improvement.
Despite involvement being driven by policy, research suggests that user involvement is often tokenistic, unrepresentative (Contandriopoulos et al. 2004; Harrison and Mort 1998; Rowe and Shepherd 2002) and subject to a selection of those users deemed to be a 'safe pair of hands' (Hogg 1999, p. 100). Furthermore, user involvement has been exacerbated by the 'tick' box culture in healthcare and the growing managerialisation of public services, creating a smokescreen to authentic user involvement. A recent study (Lakeman et al., 2007) suggests that a hierarchy of service users has emerged based on knowledge and authority in the service user community resembling stratification akin to the profession of psychiatry. This study is a platform for this research which aims to offer empirical analysis to illuminate the processes of stratification which give rise to this hierarchy of service users, which Lakeman et aI.'s work suggested existed, but which was not empirically supported. In doing so, discussions centre along three main themes; knowledge, representativeness and the 'professional' user.
Policies on user involvement have led to health organisations developing strategies around involvement where users are involved at all levels of the organisation. As well as these, a plethora of grass roots groups have gained momentum over the past twenty to thirty years (Hogg 1999, p.127) and in recent times with the support of user involvement legislations have gained greater legitimacy amongst professionals. However, organisations are in constant flux and as they become more embedded in the system and established, user-led groups may become 'professional' working closely with 'sympathetic' professionals (Hogg 1999, p.127). By applying theories from the sociology of professions on expert knowledge and jurisdiction in the context of user involvement policy and practice, I describe the processes that lead to the stratification of users and ultimately to unrepresentative involvement.
Using two comparative cases of user involvement, one a top down initiative in mental health service provision and the other a user led stroke group with a focus on stroke service development and improvement, I examine the processes of involvement that give rise to unrepresentative user involvement. In doing so I hope to contribute to theories on user involvement by illuminating the processes which lead to the stratification of users and unrepresentative user involvement.
The thesis beings by exploring the historic context of public participation and user involvement, the involvement process and debates around representativeness. This framework informs an analysis of rationales for user involvement and the challenges of involving the 'right' user. Using 40 in-depth semi-structured interviews, observations and documentary analysis the study presents insights of various actors' perspectives of the involvement process, non-representative involvement and the professional user.
The remainder of the thesis presents and compares the empirical results from the two cases in mental health and stroke. The study draws on theories from the sociology of professions to highlight the processes which lead to the stratification of service users including their professionalisation. Akin to professionals, users were found to delineate jurisdiction using their expert knowledge and education, gained through the involvement process but also by drawing on their social status and previous professional work.
The theoretical and policy literatures coupled with the empirical findings present a number of tensions. Policy directives on user involvement are awash with ambiguities resulting in different ideas of how involvement activities should be played out in practice. This is aggravated by the increasingly target driven NHS culture, where professionals often choose the easier option and involve those users who are known to them and who are usually more articulate and able. This results in the repeated involvement of a certain 'type' of user and the marginalisation of other 'lay' users leading to a hierarchy of users where a cadre of professional users dominate the user community casting other 'lay' users as amateurs.
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