Research paperTrust and people who inject drugs: The perspectives of clients and staff of Needle Syringe Programs
Introduction
There is a growing literature on the importance of trust between patients (or clients) and their health workers and health systems, with trust acknowledged as essential for effective therapeutic encounters (Armstrong et al., 2006, Buchman and Ho, 2013, Gidman et al., 2012, Jauffret-Roustide et al., 2012, Meyer et al., 2008, Nummela et al., 2009, Ostertag et al., 2006, Rowe and Calnan, 2006, Tarrant et al., 2003, van der Schee et al., 2006, Whetten et al., 2006). Most research in this field has been conducted with samples of ‘patients’ – that is, people who are required to place trust in health workers and systems because they are unwell and require professionals with technical capacity and knowledge to provide appropriate care and/or therapy. While undoubtedly vulnerable (a key factor in the function of trust (Mechanic & Meyer, 2000)), these patient groups are not subject to the type of systemic discrimination experienced by those engaged in socially stigmatised and criminalised behaviour, such as injecting drug use. People who inject drugs (PWID) are frequently perceived as undeserving – their ill-health construed as an inevitable outcome of poor and irresponsible choices (Elliott and Chapman, 2000, Fraser and valentine, 2008). Examining the role of trust (in health workers and systems) for members of such stigmatised populations is, however, critical: PWID are at greatly increased risk of acquiring blood-borne viruses (such as HIV and hepatitis C (World Health Organization, 2012)) and commonly experience other harms associated with drug use (such as abscesses and infections (Salmon et al., 2009, Topp et al., 2008)), as well as poor mental health (Teesson et al., 2000, Treloar and Holt, 2008) and barriers to primary health care (Heinzerling et al., 2006, Pollack et al., 2002). Given the compounding influences of social stigma and heightened health needs (Ahern et al., 2007, Jurgens et al., 2010), the expressions and patterns of trust between PWID and health workers and systems may well be profoundly different compared with members of the general population experiencing ill-health.
We have previously used the model of Hall, Dugan, Zheng, and Mishra (2001) to examine the issue of trust among PWID attending hepatitis C (HCV) services within opioid substitution treatment (OST) clinics (Treloar & Rance, 2014). The five dimensions of Hall's model include: (1) ‘fidelity’ – care and respect of patients is a central notion in which health professionals are understood to be acting in a patient's best interests and not taking advantage of vulnerability; (2) ‘competence’ – in which patients assess a professional's ability to avoid mistakes and achieve best results. Patients’ judgements about competence are usually closely correlated with assessments regarding their practitioners’ communication skills; (3) ‘honesty’ – encompasses practitioners’ admissions regarding lack of knowledge and disclosure of conflicts of interest (itself a component of fidelity); (4) ‘confidentiality’ – the proper use and protection of personal information; (5) ‘global trust’ – functioning as a ‘catchall’, global trust encompasses concerns that have ‘strong connections’ with, but do exclusively fit within, the other four dimensions. However, it is also more than this, capturing a ‘significant component’ of trust that Hall suggests is ‘irreducible or not subject to dissection’: the ‘soul of trust’. While intuitively appealing, the domain of “global trust” remains conceptually undeveloped. Perhaps for this reason it has not received much attention in the literature and how to operationalise it in delivery of health services is currently unclear. We argue that “global trust” may be the key domain to understanding decision-making by PWID regarding health services. Further, we argue that questions of identity – being seen as a ‘legitimate’ service user or an ‘illegitimate’ drug user, for example – underpin the making and experience of “global trust”. For as Hall et al. (2001) suggests, such elements (of stigma, identity and legitimacy) cannot only be fully accounted for by the other four domains of the model.
Notions of identity and legitimacy are inextricably bound up with the illegality of, and stigma attached to, injecting drug use. Previous literature has noted that the stigma associated with drug use produces a discrediting or de-legitimising identity: a “master status” (Lloyd, 2013, p. 93) imposed upon and threatening to define all aspects of an individual's identity (Lancaster et al., 2014, Radcliffe and Stevens, 2008), particularly as “undeserving and unworthy citizens” (MacNeil & Pauly, 2011, p. 27). Given the immediate and salient impact of contact with the criminal justice system (Burris et al., 2004), the lived experience of someone who injects drugs may commonly be more affected by concerns about illegality than health consequences (Lancaster et al., 2014). There are also a range of other experiences, including sanctions, that connote PWIDs’ social and structural vulnerability. Discrimination, stigmatisation, prohibited or restricted access to health care and other services, lost employment opportunities, or having children removed from parents’ care, have all been documented as primary concerns of PWID (Burris et al., 2004, Busza et al., 2013, Hayashi et al., 2013, McNeil et al., 2014, Rhodes, 2002, Rhodes et al., 2010, Richardson et al., 2013). When PWID do choose to engage with health services, their prior experiences with healthcare and other systems will inevitably frame their expectations and colour their perceptions regarding contact with such systems (Ward & Coates, 2006). It has been argued that the process of stigmatisation, including the production of stigmatised and (therefore) ‘discredited’ social identities, functions as a means by which social order is (re)produced (Parker & Aggleton, 2003). Previous research has noted the degree of social control enacted by opiate substitution systems as unlike any other ‘therapeutic’ intervention (Fraser and valentine, 2008, Harris and McElrath, 2012, Radcliffe and Stevens, 2008). Similarly, authors have posited the persuasive power of ‘symbolic violence’ to explain the internalisation of negative social meanings leading PWID to understand themselves as less “worthy” and deserving than others (Rhodes, Harris, & Martin, 2013), or as wasting valuable resources (Neale, Tompkins, & Sheard, 2008); while others have focussed on the ways in which the physical and/or spatial design of services serve to (re)produce pejorative stereotypes of ‘the drug user’ (Crawford, 2013, Fraser, 2006a, Rance et al., 2012).
For our purposes, the literature speaks to the overarching and interconnected themes of service user identity, stigma and legitimacy – themes sufficiently central to the experience of PWID yet distinct from Hall's other domains of trust, such that they serve to advance our understanding of the conceptually under-developed domain of ‘global trust’. We argue that it is the imposed, stigmatising and de-legitimating identity of participants as PWID that appears to fundamentally shape their interactions with, experiences of and ultimately underpins the extent of trust they have for health services. And it is the interplay between identity, stigma, and legitimacy, and the complex, shifting ways in which PWID negotiate and at times embody this identity within and across different health service contexts, that we maintain constitutes the concept of ‘global trust’ in PWID participants’ experiences of health services.
In order to explore issues of trust in health services for PWID, this study examined the perceptions and experiences of NSP staff and clients within one area of Sydney, Australia. We used Hall's model of trust to guide our analysis on the premise that the concept “global trust” (as something beyond that explained by the remaining four domains of trust) would be of particular significance for this client group. We posited that the relationship between stigma, identity and legitimacy was not only a productive means of understanding participant perceptions and experiences of trust, but would make a valuable contribution to developing the concept of ‘global trust’
Section snippets
Method
This study recruited people attending Needle and Syringe Programs (NSPs) as well as staff of these services. NSPs remain the cornerstone of public health responses to blood-borne viruses (BBVs) in Australia and internationally (Australian Government Department of Health and Ageing, 2010, World Health Organization, 2012). NSPs have operated in Australia since 1986 and were established with bi-partisan political support as a response to HIV (MacDonald et al., 1997). With some exceptions (notably
Characteristics of the sample
Twelve NSP workers were interviewed, including: six health education officers; three registered nurses; one social worker, and two team leaders. To protect confidentiality, no further details of participants are provided.
A total of 31 NSP clients were recruited to undertake in-depth interviews, including 19 women and 12 men participants. Three participants were recruited from secondary NSPs and 28 from primary NSPs. The average age of participants was 39 with a range of 20–58 years. Seven
Discussion
Accounts from PWID participants regarding their experiences of health services were strongly characterised by a perception of mistrust, particularly among drug treatment services. Whilst such experiences could be read, superficially, as simply pertaining to the domains of fidelity, competence, honesty and confidentiality, the collective experience of our PWID participants was in fact consistently and demonstratively underpinned by the uniquely demonised identity of drug users in contemporary
Acknowledgements
We acknowledge our partners in the health authority area who funded this project. We thank the participants for their time and commitment to the research process. The Centre for Social Research in Health is supported by a grant from the Australian Government Department of Health.
Conflict of interest statement: The authors have no conflict of interest to declare for this manuscript.
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