Associations between clinical and sociodemographic data and patterns of communication in pediatric oncology

Abstract Pediatric communication directly contributes to treatment adherence, fewer symptoms, better clinical responses, healthier treatment adaptation and management of psychosocial issues. This study aimed to evaluate associations between the clinical and sociodemographic data of caregivers and children and the communicative patterns of pediatricians. Three oncohematology physicians and 44 child-caregiver dyads took part, with audio recording of 146 medical consultations. The physicians interacted more often with older children, offering more guidance, clarifying doubts, and asking for information. The number of questions from children and caregivers was positively correlated with the physician's communicative behaviors. However, there was no association between the age of the children and the number of doubts of the patients. The diagnosis, treatment time, family income, marital status and caregiver's level of education were associated with the amount of interaction provided by physicians to the children and caregivers. This study offers subsides relevant to psychosocial interventions that may improve communication in pediatric oncohematology settings. (AU)

¿Cuánta información desean recibir y cómo prefieren tomar sus decisiones pacientes con cáncer avanzado atendidos en una Unidad del Programa Nacional de Dolor y Cuidados Paliativos en Chile? / Information disclosure and decision making preferences of patients with advanced cancer in a Pain and Palliative Care Unit in Chile

Information disclosure and decision making process are important steps in advanced cancer patients management; however, there is no research done in this area in Chile. Aims: To know the preferences of patients with advanced cancer related to information disclosure and style of decision making process. Methods: Prospective observational study with patients in the Palliative Care Unit of Sótero del Río Hospital, in Santiago, Chile. The preferences were evaluated with a Disclosure Information and a Decision Making Preferences Questionnaire. Results: 100 patients were recruited, 52% males, average age 63 years; 90% wanted to receive complete information about diagnosis and 89% complete information about prognosis. The preferences related to decision making process style were: 60% shared, 27% passive and 13% active. The expressed satisfaction with the information received was 89% and 87% with the way decisions were actually made. Conclusions: A majority of patients preferred to receive complete information about diagnosis and prognosis and to make shared decisions. The satisfaction with information disclosure and decision making process was very high. The data of this study supports the need of an adequate information disclosure and of exploring the individual preferences of our patients, with the goal of promoting an informed decision making process that respects the preferences of our patients.

Como negociar a responsabilização em conversas sobre viver com diabetes / How to negotiate the accountability in conversations about living with diabetes

A Responsabilização é um fenômeno importante em conversas sobre doenças crônicas, tais como o diabetes. Assim, o objetivo deste estudo foi entender como a Responsabilização foi manejada em grupos em que se conversava sobre viver com diabetes. Metodologicamente, este estudo foi inspirado pela Psicologia Discursiva. Foram realizadas cinco oficinas com 25 pessoas com Diabetes mellitus Tipo 2 e seus cuidadores. Analiticamente, foram identificadas duas estratégias discursivas: (a) "Responsabilizando aos outros: atribuindo responsabilidade a terceiros" e (b) "Responsabilizando-se", subdividida em: "Responsabilizando-se: o uso de outras formas de cuidado" e "Responsabilizando-se: o acostumar-se a viver com diabetes". As análises mostraram que as estratégias utilizadas permitiram aos participantes se colocarem discursivamente no contexto interacional como pessoas que cuidavam da saúde, bem como administrarem possíveis acusações. Além disso, foi possível compreender como a Responsabilização é um processo discursivo e relacional diretamente relacionado às demandas situacionais do contexto interativo e às expectativas socioculturais.

Accountability is an important phenomenon in conversations about chronic diseases such as diabetes. Thus, the purpose of this study was to understand how Accountability was managed in groups that talk about living with diabetes. Methodologically, this study was inspired by the Discursive Psychology. Five workshops were held with 25 people with type 2 Diabetes mellitus and their caregivers. Analytically, we identified two discursive strategies: (a) "Blaming others: assigning responsibility to others" and (b) "Blaming oneself", sub-divided into: "Taking responsibility: the use of other forms of care" and "Taking responsibility: the getting used to living with diabetes". The analysis showed that the strategies used allowed participants to put themselves discursively in interactional context as people who cared for the health and who managed possible charges. Furthermore, it was possible to understand how accountability is a discursive process directly related to relational and situational demands of the interactive context and socio-cultural expectations.

Motivation and frustration in cardiology trial participation: the patient perspective

OBJECTIVE: The participation of humans in clinical cardiology trials remains essential, but little is known regarding participant perceptions of such studies. We examined the factors that motivated participation in such studies, as well as those that led to participant frustration. METHODS: Patients who had participated in hypertension and coronary arterial disease (phases II, III, and IV) clinical trials were invited to answer a questionnaire. They were divided into two groups: Group I, which included participants in placebo-controlled clinical trials after randomization, and Group II, which included participants in clinical trials in which the tested treatment was compared to another drug after randomization and in which a placebo was used in the washout period. RESULTS: Eighty patients (47 patients in Group I and 33 patients in Group II) with different socio-demographic characteristics were interviewed. Approximately 60% of the patients were motivated to participate in the trial with the expectation of personal benefit. Nine participants (11.2%) expressed the desire to withdraw, which was due to their perception of risk during the testing in the clinical trial (Group I) and to the necessity of repeated returns to the institution (Group II). However, the patients did not withdraw due to fear of termination of hospital treatment. CONCLUSIONS: Although this study had a small patient sample, the possibility of receiving a benefit from the new tested treatment was consistently reported as a motivation to participate in the trials.