Academic journal article Health Sociology Review

Tensions in Compliance for Renal Patients - How Renal Discussion Groups Conceive Knowledge and Safe Care

Academic journal article Health Sociology Review

Tensions in Compliance for Renal Patients - How Renal Discussion Groups Conceive Knowledge and Safe Care

Article excerpt

Compliance is a matter of concern in the medical literature because of the correlation between non-compliance and patient morbidity or mortality (Denhaerynck et al., 2007; McCarthy, Shaban, & Fairweather, 2010). Patients are expected to be compliant by taking medications, accepting treatments, conforming to diets or exercise regimes, attending appointments and submitting to tests (Smith & Shuchman, 2005). The medical literature usually looks to patients for the reasons for non-compliance, proposing factors such as psychological issues, and problems with literacy or information provision (Cukor, Rosenthal, Jindal, Brown, & Kimmel, 2009; McCarthy et al., 2010; Smith & Shuchman, 2005). Factors contributing to compliance in renal patients are usually studied quantitatively (e.g., Witenberg et al., 1983), with compliance conceived as a static, binary measure - even when it is acknowledged as dynamic (Tijerina, 2009). Such studies do not cast light on the processes within which compliance issues are situated.

This paper explores the idea of compliance from the perspectives of patients and 'carers' - friends or relatives who help patients with healthcare at home or who accompany them to hospitals or clinics. Rather than a simple question of compliance versus non-compliance, patients and carers described a range of possibilities for what compliance might mean for patients, across time. They also described overseeing and attempting to prevent health professionals from making decisions or undertaking practices which are not compliant with medical best practice, an inversion of the expected loci of expertise in patient-practitioner relationships.

Since the early 1970s and possibly riding on the back of a general 'neo-liberal turn' in the West, patients have been encouraged to be 'empowered' and more involved in decisionmaking about their health care, an idea which has strengths and drawbacks (Godbold, forthcoming). Strengths include that it may improve outcomes for patients and increase their sense of control over their situation (Department of Health, 2001), drawbacks include that patients are only able to control circumstances to an extent, beyond which they encounter the physical limitations of their illness, and the power of practitioners to diagnose, choose treatments and perform procedures (Roberts, 1999). Unlike consumers, patients are not always able to 'shop around' and choose new treatment centres or different practitioners (Lupton, 1997), due to factors such as inflexibility in the system, urgency in the need for treatment, difficulties with language, capacity to pay and distance. Importantly also, not all patients want to be 'in control' of their care, with the responsibility that implies (Aujoulat, d'Hoore, & Deccache, 2007; Pollock, Moghaddam, Cox, Wilson, & Howard, 2011; Roberts, 1999). And conversely, practitioners are not always welcoming of patients who try to 'know too much' about medical decisions (Broom, 2005; Kopelson, 2009).

Some patients are 'unpopular' with health professionals (Groves, 1978; Highley & Norris, 1957; Koekkoek, Hutschemaekers, van Meijel, & Schene, 2011; Steinmetz & Tabenkin, 2001; Stockwell, 1984; Wright & Morgan, 1990). 'Unpopular' patients receive different treatment from other patients including being ignored or made to wait (Jeffery, 1979; Stockwell, 1984; Werner & Malterud, 2003).To be seen as 'a good patient' patients must demonstrate active interest in their care yet refrain from asking too many questions (Stacey, Henderson, MacArthur, & Dohan, 2009). Patients are aware of the need to be seen as 'good' (Werner & Malterud, 2003), raising the question: how are patients to negotiate the tensions between compliance, empowerment and co-operation?

Recently emerging studies into the experiences of kidney failure sometimes mention patients who feel they know more about their condition than some clinicians (e.g., Tong et al. …

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