Cómo recuerdan los pacientes la comunicación del diagnóstico. A propósito de quince testimonios relacionados con enfermedades poco frecuentes

Abstract

Cómo recuerdan los pacientes la comunicación del diagnóstico. A propósito de quince testimonios relacionados con enfermedades poco frecuentes How patients remember when they were given the diagnosis. About fifteen testimonies related to rare diseases s a m a n t h a r e q u e n a r o m e r o / j u a n m . a r c o s u r r u t i a / a n t o n i o m . b a ñ ó n h e r n á n d e z u n i v e r s i d a d d e a l m e r í a AbstrAct: Doctor-patient communication has led, in recent years, great interest among the health community. Communicating the diagnosis is one of the key moments for people suffering an illness. In this paper, we will analyze 15 testimonies of people and families affected by a rare disease. We will observe how they remember the moment when they were told the diagnosis, paying close attention to the discourse processes and techniques related to space (representing direction, itinerary and speed) and the use of other relevant discourse strategies (communication accommodation).Keywords: rare diseases, diagnosis, doctor-patient communication, discourse analysis.resumen: La comunicación médico-paciente ha suscitado, en los últimos años, gran interés entre la comunidad sanitaria. La comunicación del diagnóstico es uno de los momentos más importantes para las personas que sufren una enfermedad. En este trabajo vamos a analizar 15 testimonios de personas y familiares de afectados por una enfermedad rara o poco frecuente. Observaremos cómo recuerdan el momento en el que les comunicaron el diagnóstico, prestando máxima atención a los procesos y técnicas discursivas relacionadas con el espacio (representación de la dirección, del recorrido y de la velocidad), así como al empleo de otras técnicas discursivas (acomodación comunicativa).Palabras clave: enfermedades raras o poco frecuentes, diagnóstico, comunicación médico-paciente, análisis del discurso.

Emotional experience of the diagnostic process of a rare disease and the perception of support systems: A scoping review

“…Of the twenty studies, four of them, or 20%, showed evidence focused only on patients diagnosed with an RD (Adams et al, 2018; Alarcón‐Ovalle et al, 2016; Christensen et al, 2017; Jensen et al, 2019), and 45%, nine studies of the total, reported only on relatives (Anderson et al, 2013; Bendixen & Houtrow, 2017; Cardinali et al, 2019; Custódio et al, 2018; Esteban et al, 2015; Germeni et al, 2018; Granero‐Molina et al, 2020; Lim et al, 2012; Zurynski et al, 2017). Then, four studies focused on both family members and patients with an RD, representing 20% (Behan et al, 2016; Esquivel‐Sada & Nguyen, 2018; Henderson et al, 2009; Requena et al, 2014), whereas only one study focused on RD experts (Blöß et al, 2017). One included patients, relatives and lawyers (Kesselheim et al, 2015), and one included patients, relatives, organisations and healthcare professionals related to RDs which represent 5% each (Lopes et al, 2018).…”

“…Qualitative studies ( n = 14) (Lim et al, 2012; Requena et al, 2014; Kesselheim et al, 2015; Alarcón‐Ovalle et al, 2016; Bendixen & Houtrow, 2017; Blöß et al, 2017; Christensen et al, 2017; Adams et al, 2018; Lopes et al, 2018; Esquivel‐Sada & Nguyen, 2018; Germeni et al, 2018; Cardinali et al, 2019; Jensen et al, 2019; Granero‐Molina et al, 2020). All studies were judged to have appropriately used the qualitative approach to answer the research question and to have adequately used the qualitative data collection methods to address the research question.…”

“…The lack of therapeutic communication in the absence of a diagnosis was an exhausting process, on a psychological, social and even health professional level, which lead to a great deal of misunderstanding for the individual and his/her family (Granero‐Molina et al, 2020). Sometimes, the doctors did not accept the complaints and/or these were misinterpreted (Blöß et al, 2017 ) and even confrontations occurred (Requena et al, 2014).…”

“…Finally, and a very relevant facilitator to be promoted, was the collaborative and proactive attitude of people with an RD (Requena et al, 2014).…”

“…Finally, two relevant aspects should have been detailed. On the one hand, the obstacles for the diagnostic process and its consequences affected not only patients and families but also health professionals (Requena et al, 2014, Lopes et al, 2018). On the other hand, the health system of a country and the type of coverage it offers (through public financing or private insurance) established clear differences in health care (Esquivel‐Sada & Nguyen, 2018).…”