RESUMO
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.
Assuntos
Negociação , Insuficiência Renal Crônica , Humanos , Argentina , Motivação , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/psicologia , Pesquisa QualitativaRESUMO
After several years of loud and clear rejection, the idea of a public cognitive deficit insistently reappears in the agenda of Science Communication and Public Understanding of Science studies. This essay addresses two different kinds of reason - practical and epistemic - converging at that point. In the first part, it will be argued that the hypothesis of the lack of knowledge among laypeople and its controversial relationships with their interests and attitudes towards science prevails because it is an intuitive and optimistic way to frame the gap between science and society and, therefore, to cope with its causes and consequences. In the second part, a deeper level of reasons will be examined, in order to show that the persistence of the idea has its roots in the objective epistemic asymmetry between scientists and the public, the scope of which is not always properly judged. To recognize this asymmetry as a previous condition for their interactions may help to surpass the byzantine debate: deficit yes or no and open up original questions for the field, summarized in the closing remarks.