Abstract
Abstract Background and Aims For people over the age of 65 with comorbidities and/or poor performance status, and for patients over the age of 80, the choice between receiving conservative kidney management (CKM) or receiving dialysis can be complex, and involves weighing possible benefits, risks and effects on quality and length of life. Patients often rely on information resources from renal units, to support their decision-making. We describe how information resources present living with and dying of kidney disease in relation to CKM, haemodialysis and peritoneal dialysis, and consider implications for patients’ treatment decision making. Method Information resources were collected between June 2021 and January 2023 from four UK renal units with varying CKM treatment rates, as part of the OSCAR study (Optimising Staff-Patient Communication in Advanced Renal Disease). Physical and digital copies of information resources were collected from outpatient waiting areas, consultation rooms, and group patient education sessions. We included resources which focused on the treatment options of CKM, haemodialysis, peritoneal dialysis and transplant. Documents were categorised as: Direct Treatment Option Information Resources, focusing specifically on treatment options, either individually or in comparison (category A); Indirect Information Resources, focusing on broader contextual information related to treatment options, such as lifestyle, holiday and diet guidance, and the logistics of receiving treatment, e.g. transport (category B). Document analysis of the information resources was conducted, informed by critical discourse analysis. We examined how documents describe and explain living and dying with kidney failure in relation to treatment options, and how treatment options were placed in context, identifying themes, ‘frames’ and discourse. Results 72 resources were identified across the four renal units, with 46 documents included after deduplication and screening (Fig. 1). Analysis identified three global themes (see Table 1 for illustrative data extracts): Conclusion UK information resources typically present unbalanced explanations of dialysis and CKM, and equate CKM with death and dying. Despite the focus on patients’ “right” to choose a treatment option, it may therefore be challenging for a patient to choose CKM, even when this treatment choice is the best fit for their goals and values. Furthermore, for patients who choose dialysis, information resources often exclude important end-of-life information, limiting their opportunity to consider and participate in advance care planning.
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