3.9.5.6 Managing Treatment Requirements

In the context of Aboriginal dialysis patients the term ‘compliance’ (used only by staff) most often refers to whether or not patients actually attend dialysis. Not surprisingly, Aboriginal patients do not think of, or describe themselves, as ‘non–compliant’,^{4 68} and their reported rationale for missing dialysis on any given day might include:

• The urgency of dialysis relative to the totality of issues they are grappling with.
• Negative personal social/emotional states including anger, depression, loneliness.
• Need to return home to attend to family or cultural business.
• Chaotic domestic and family life.
• Beliefs that their well–being is better served by doing something else (going home, meeting family etc).
• Alcohol and/or drug issues – their own or someone else’s.
• Disbelief that missing a treatment that is (overall) regular and continuous is risky.

One renal patient told members of the Study Team that “[it] would be worth it [to return home and miss some dialysis] because it would open my heart and spirit to get there…I’m battling to get back.”

Patient and family commentary also suggests that poor levels of understanding, including understanding of the real levels of medically assessed risk, is also a contributor. This is not to say that ultimately, some patients, with full knowledge of potential consequences, will not miss dialysis. Aboriginal patients, like any renal patients, may also make poor decisions.

Patients’ motivation to manage dialysis requirements is also strongly influenced by their experiences in the dialysis program and in the unit itself, including the quality of patient–staff relations and patients’ perception of their treatment. “Is it a unit that welcomes patients and provides culturally appropriate care?”²² The experience of the Kimberley Satellite Dialysis Centre, operating since 2002 and recently reporting that patients’ adherence to care (dialysis prescription adherence and meeting clinical targets) has been excellent suggests that factors contributing to their success include:

• A sense of ownership/involvement patients have for the organisation providing the service.
• Extensive involvement of Aboriginal staff.
• A regional renal social worker.
• A dialysis patient transport service run by an AHW who, as a community member, has close knowledge of family networks and movements.
• On–site primary health care.
• Provision of dialysis closer to home.

The Alice Springs renal unit Social Worker reported that a task that occupies a significant part of his time is tracking people who miss dialysis. He is available to the renal unit for 0.8 FTE and supported by an Aboriginal Liaison Officer. With over 150 renal patients in Alice Springs, of whom at least 30% are living in the most tenuous circumstance with no permanent stable accommodation, stakeholders indicated they thought it was predictable that patients will have difficulties committing to the dialysis regimes. Consultation revealed little evidence of coordination in addressing the social and cultural needs of dialysis patients either in Alice Springs or over the cross–border region.