Patient Centered Design: Challenges and Lessons Learned from Working with Health Professionals and Schizophrenic Patients in e-Therapy Contexts

Patient Centered Design: Challenges and Lessons Learned from Working with Health Professionals and Schizophrenic Patients in e-Therapy Contexts

Catarina I. Reis (Polytechnic Institute of Leiria, Portugal), Carla S. Freire (Polytechnic Institute of Leiria, Portugal), Joaquin Fernández (Polytechnical University of Catalonia, Spain) and Josep M. Monguet (Polytechnical University of Catalonia, Spain)
DOI: 10.4018/978-1-4666-6339-8.ch056
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Abstract

Patient-Centered Design (PCD) is a particular type of User-Centered Design (UCD), where the end-user is a patient that will use an Information and Communications Technology (ICT) solution for healthcare. It focuses on needs, wants, and skills of the product's primary user and implies involving end-users in the decision-making and development process of the solution. e-Therapy aims to provide support to therapy sessions through ICT solutions. It has grown in the last years, and in the mental health arena is being used for specific therapeutic contexts. It is an especially difficult environment due to specificities of the patients' conditions and the physical access to patients being restricted and, sometimes, not even possible. Thus, a PCD approach can be accomplished through the health professionals involved, applying some of the most well known methods of UCD: interviews, questionnaires, focus groups, and participatory design. eSchi is an e-Therapy tool that complements traditional practices for the cognitive rehabilitation and training of schizophrenic patients. It was successfully developed using a PCD approach.
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Background

Mental disorders such as schizophrenia are amongst the 20 leading causes of disability worldwide (World Health Organization, 2004). Schizophrenia is one of the disorders identified as a priority. Currently, it affects about seven per thousand of the world adult population, mostly in the age group 15-35 years, summing up to almost 24 million people worldwide. Although the incidence rate is rather low, three per 10.000 inhabitants, the prevalence is high due to chronicity (2008) and (World Health Organization, 2007).

Schizophrenia is a severe mental disorder usually detected in the early adulthood and characterized by disruptions in thinking. People find difficult “to tell the difference between real and unreal experiences, to think logically, to have normal emotional responses, and to behave normally in social situations” (MedlinePlus, 2008). Someone that endures this condition sees his/her language, perception, and sense of self, affected. Seldom, the condition includes psychotic experiences, such as hearing voices or delusions, and can impair functioning through the loss of an acquired capability, disabling the person to earn a living or continue with its studies.

There is no known cure for schizophrenia, but it is treatable and allows some of those who suffer from it to have an adequate and productive life, enabling them to integrate fully into society. Severe cognitive deficits such as memory loss are a reality for schizophrenia patients, regardless of the schizophrenia’ subtype considered: paranoid; hebephrenic or disorganized; catatonic; undifferentiated or residual (Elvevag, Maylor, & Gilbert, 2003).

Current national policies are especially dedicated to prevent and improve mental health assistance, considering mental disorders as a public health case. One of these policies includes the digital provision of mental health (e-Mental Health) information and services through Mental Health Information Systems (MHIS) (World Health Organization, 2009) and (World Health Organization, 2008).

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