Dr. Roser Garreta explains the use of ethnography in ictus patient assistance
Patient involvement is good for patients and good for healthcare systems. For instance, the complex chronic patient (CCP) program of Barcelona’s Sant Joan de Deu Hospital has reduced hospital admissions of these kind of patients by 60% and 62% of emergency admissions. It is a great success because chronic patients are among those with a higher use of hospitals: they make multiple visits, are often polymedicated and there are many different cases to treat.
This is what Doctor Xavier Martet explained at the working session “Patients and Quality Assistance at Healthcare”, organized the past January 23rd by the Catalan Health Ministry at its very beautiful modernistic location in Barcelona. The Ipsen supported seminar was structured into two parts: first doctors and healthcare institutions spoke about patient engagement programs for better assistance, while in the second part patients spoke about their experiences: give a voice to the patients was a great point by the organization.
Multidisciplinary teams are changing attention
The results of Sant Joan de Deu hospital described by Doctor Martet were possible thanks to a special program that included patient training (on how to breath, for instance), a multidisciplinary team composed by cardiologists, pulmonologists and other clinical specialists. According to Doctor Martet, multidisciplinarity is essential for success; this was later reinforced by patient’s associations.
Multidisciplinarity means for many hospitals changing their departments coming from the old fordistic organization by departments by cross-department teams. Consequences are not only of organisational nature, but have a physical translation to architecture. For example, only 2 days ago, the Klinikum Grosshadern in Munich announced the demolition of its old “industrial” building from 1973 in order to build one that is more prepared for multidisciplinary teams (shorter pathways) and technology (read the news here).
Recently the well-known specialist for healthcare technology and nurse José María Cepeda wrote in an article in the leading Spanish nursing magazine, that the historical opposition between technology and humanities seems to be vanishing. The Munich case and the Sant Joan de Deu program seem to give Cepeda right. Those interested in the CCP program for mental health can have a look to this video (in Spanish)
Ethnography as a tool for quality assistance design
When it comes to design programs like the one presented by Dr. Martet or others like the one explained by Dr. Sánchez de Toledo in paediatric oncology at the Barcelona Vall D’Hebron hospital, ethnography turns out to be a very useful tool.
Doctor Roser Garreta, head of the rehabilitation unit at Mútua Terrassa, presented an ethnography done with cerebral stroke patients and showed that many insights were obtained that showed the change the disease meant for the patients, how ictus affects relationship with partners (and threatens them seriously), with children, friends … how family and social roles change completely … and how feelings of frustration, dependence and anger are born.
The insights showed also what kind of aid is needed to overcome the disease, how mobility, co-ordination, information and training can be increased for the better. Thus, the patient’s life could be significantly improved with the help of volunteer organizations, with a phone assistance service, with social integration initiatives and with the role of the expert patient; a role that was mentioned by all speaking doctors and was strongly demanded by patient organizations. The ethnography also helped to identify commercial products and services needed by ictus patients, like tele-rehabilitation, dispensers or special clothing.
Patient associations were present at the seminar: kidney, hepatitis, neuromuscular, rare diseases, diabetes and spasticity were represented. May be the working session would have been more interesting if patients spoke first about their experience and context, so that engagement programs’ impact could then be better understood.
Patients exposed many experiences were their quality of life during treatment could be frankly improved. But all agreed about the fact that the lack of multidisciplinary teams was a great burden: many more hospital visits than necessary is the consequence, as well as the voice of somebody who has the global overview of all the case. Thus, a loss of quality of life and a hindering of their working and family time has to be added to the suffering caused already by the disease.
This is why all patients demanded multidisciplinarity and the need of an expert and active patient as a key success factor for therapeutic results and improved quality of life, as Claudia Tecglen, head of the Spanish Spasticity Association, stated.
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