Personal control in rehabilitation: An internet platform for patients with schizophrenia and their caregivers

Abstract

In order to facilitate optimal quality and continuity of care and self-management of patients with schizophrenia, Personal Control in Rehabilitation (PCR) has been developed, a comprehensive internet-based platform. PCR aims to reach patients with schizophrenia or related psychotic disorders and their (in)formal caregivers. It provides caregivers and patients with a kind of dashboard giving them (tailored) information about the physical and psychosocial situation of the patient, their compliance with treatment, and facilitates optimal self-management for patients. With the use of PCR, informal caregivers have access to information about treatment and can consult formal caregivers, formal caregivers have easy access to the multidisciplinary guideline schizophrenia and to the regional care plans. Patients and their formal and informal caregivers completed questionnaires about empowerment, quality of life, quality of care and workload before the introduction of PCR and nine months later. A sample of them also participates in focus group discussions about the usefulness and usability of PCR and bottle necks in using the platform. Response to the questionnaires, especially at followup, was not adequate for statistical analyses of its results. Therefore, the focus of this paper is on the process evaluation of the implementation of PCR in two large mental health organisations in the Netherlands. Data for this evaluation are results of a number of open questions of the questionnaire and results of the focus group discussions. In these discussions, 19 patients, 12 informal caregivers, 33 formal caregivers and three managers participated. Preliminary results of this study show that the implementation of PCR is feasible and patients, formal and informal caregivers were satisfied with the use of PCR and frequently used PCR to communicate, make appointments, give feedback and look for information about their disease and its treatment. PCR is considered as a help in reaching more self-management by patients, to facilitate communication between patients and caregivers, and to match treatment and support. It seems useful also for other patient groups and their (in)formal caregivers like patients with depression, autism and addiction disorders.