Kidney failure, status passage, and the transitional nature of living with the disease: A qualitative study in Argentina.

The span of kidney failure (KF) has been extended by advances in treatment. To elucidate the lived experiences of people with KF, we draw on Glaser and Strauss's theory of status passage. Semi-structured interviews were conducted with 50 patients with KF and 14 health professionals, from two healthcare facilities in Buenos Aires, Argentina. The theory informed on the temporal dimensions of people's passages and dimensions related to what actors know of this passage. We described the status passage as a sequence of transitions (starting dialysis, receiving a transplant, returning to dialysis) that have devastating effects on patient's roles, and are accompanied with fear and experience of wasting time. Temporal aspects were crucial and planning was useless; indeed, timing of statuses was uncertain. With a transplant, certain roles and capacities could be regained. Some patients were not aware of the chronic nature of the disease and the ultimate reversibility of the transplant. Control over the passage was minimal because of the unpredictable prognosis of the disease but patients employed strategies to regain it. Control was even more limited for people who migrated to receive a treatment; whose lives were completely altered. Status passage theory signaled the overwhelming impact of the passage on all aspects of people's lives, the uncertainty of the transitions, lack of control and awareness of essential aspects, and unexpected aspects of desirability, adding to our understanding of how people experience this disease and its treatments.

Negotiating treatment and managing expectations in chronic kidney disease: A qualitative study in Argentina.

OBJECTIVES: To describe how patients with CKD negotiated assigned responsibilities in the management of their disease, resulting in potential relational nonadherence. METHODS: Qualitative study performed in two healthcare facilities in Buenos Aires, Argentina, including 50 patients and 14 healthcare providers. We conducted semistructured interviews which were analysed using a frame of reference with concepts of Burden of Treatment and Cognitive Authority theories. FINDINGS: Adherence to treatment defined "good patients". Patients needed to negotiate starting treatment, its modality and dialysis schedule, although most patients felt they did not participate in the decision process and that providers did not acknowledge implications of these decisions on their routine. Some patients skipped dialysis if concerns were not attended. Regularly, patients negotiated frequency of visits, doses, dietary restrictions and redefined relationships with their support networks, sometimes with devasting effects. As a result of overwhelming uncertainty some patients refused enrolling into a transplant program. When the frequency of complications increased, patients considered abandoning dialysis. CONCLUSION: When patients perceived demands were excessive or conflicting, they entered into negotiations. Relationally induced nonadherence may arise when professionals do not or cannot enter into negotiations over patients' beliefs or knowledge about what is possible for them to do.

How do social and economic vulnerabilities shape the work of participating in care? Everyday experiences of people living with kidney failure in Argentina.

BACKGROUND: A new chronic patient has emerged, with a burden of symptoms and treatment. Patients with kidney failure (KF) require complex and expensive treatments, and in underresourced contexts, they struggle to obtain quality and timely care, even in countries with universal health coverage. We describe how, in such a setting, social structural factors and control over services placed by the system affect the burden of treatment of patients. METHOD: This qualitative study was undertaken in Buenos Aires, Argentina. Semistructured interviews were conducted with patients with KF (n = 50) and health professionals (n = 14) caring for these patients. Additionally, three types of health coverage were included: public health, social security and private healthcare, with diverse socioeconomic backgrounds. FINDINGS: Patients' agency to meet demands is extended by relational networks with redistributed responsibilities and roles. Networks provided logistical, financial, emotional support; indeed, patients with limited networks were susceptible to rapid health deterioration, as treatment interruptions could not be identified in time. Control over services translated into scarce information about treatment options, changing dialysis schedules, lack of contact with transplant teams, and new rules to access medication or make requests. For any type of coverage, there was an economic burden related to noncovered medication, copayments, travel, caregivers, specialized diets, and moving to a city offering treatment. Many patients reported economic difficulties that prevented them from even affording meals. Hardships worsened by unemployment because of the disease. Some patients had migrated seeking treatment, leaving everything behind, but could not return without risking their life. Transplanted patients often needed to re-enter the labor market against a background of high unemployment rates. CONCLUSION: While health policy and practices encourage self-management, the patient may not have the capacity to meet the system's demands. A better understanding of BoT could contribute to improving how patients experience their illness.

Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies.

INTRODUCTION: Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). METHODS: Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories. RESULTS: Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its advanced stages when renal replacement treatment is necessary. Unfunded healthcare was fragmented and of indeterminate duration, with patients often depending on emergency care. Treatment could lead to unemployment, and in turn, to uninsurance or underinsurance. Patients feared catastrophic events because of diminished financial capacity and made strenuous efforts to prevent them. Transportation to and from haemodialysis centre, with variable availability and cost, was a common problem, aggravated for patients in non-urban areas, or with young children, and low resources. Additional work for those uninsured or underinsured included fund-raising. Transplanted patients needed to manage finances and responsibilities in an uncertain context. Information on the disease, treatment options and immunosuppressants side effects was a widespread problem. CONCLUSIONS: Being a person with end-stage kidney disease always implied high burden, time-consuming, invasive and exhausting tasks, impacting on all aspects of patients' and caregivers' lives. Further research on BoT could inform healthcare professionals and policy makers about factors that shape patients' trajectories and contribute towards a better illness experience for those living with CKD. PROSPERO REGISTRATION NUMBER: CRD42014014547.