Schizophrenia-Window-of-Hope.com: Development of a Psycho-Educational Internet Resource for the South African Setting

By Bodenstein, S.; Niehaus, D. J. H. et al. | South African Journal of Psychiatry, April 2010 | Go to article overview

Schizophrenia-Window-of-Hope.com: Development of a Psycho-Educational Internet Resource for the South African Setting


Bodenstein, S., Niehaus, D. J. H., Koen, L., Wilson, Z., South African Journal of Psychiatry


Schizophrenia is a debilitating illness that impacts significantly on the lives of sufferers and their families. (1,2) Owing to a paucity of residential and day-care facilities, the shift to community mental health services has increased this burden in recent years. (3) Psycho-educational programmes for the families of persons with schizophrenia have been shown to improve relapse rates, and when relapse rates decrease, the burden on families as well as health care systems is reduced. (4) Unfortunately, in our setting psycho-educational initiatives are not always readily available or utilised by mental health care practitioners.

Leach et al. have shown that although mental health care users prefer a clinician to convey information regarding their illness, younger users in particular also find informational websites useful. (5) A survey has also suggested that the Internet may be beneficial in terms of psycho-education and information for people living far from health centres, and also particularly for those suffering from a stigmatised illness. (6,7) To date, no studies investigating the value of the Internet for distribution of mental health information have been conducted in our setting.

Several telephone helplines related to a variety of mental illnesses are currently available in South Africa. However, to our knowledge none of these specifically focus on schizophrenia. Furthermore, although a large number of international informational websites are available, such as www.schizophrenia.com and www.schizophreniaconnection.com, the information is not always applicable to the South African setting. Interactions with mental health care users and their families suggested that there is a need for a South Africa-specific resource regarding schizophrenia, leading us to explore the feasibility of developing such a resource.

Methodology

Taking into account our resource-limited setting, we decided to approach the South African Depression and Anxiety Group (SADAG), who are already running an established helpline for people with depression and anxiety disorders, in the hope of piggy-backing our service on theirs. After initial discussions, it was established that the helpline operators would require a manual to assist them to address queries appropriately.

A multidisciplinary team consisting of 3 consultant psychiatrists, a professional psychiatric nurse, 2 occupational therapists, a psychologist, a social worker and a registrar in psychiatry was therefore convened and tasked to focus on two aspects: (i) creating flowcharts for management of commonly occurring scenarios; and (ii) compiling and answering frequently asked questions (FAQs).

The list of FAQs was compiled on the basis of information obtained from personal interviews with clients, their friends and families and fellow colleagues, as well as electronic and other informational resources. Answers to FAQs and flowcharts were then sourced using various data sources, i.e. textbooks, journals and websites such as www.schizophrenia.com and www.SANE. org.uk, with final outcomes based on multidisciplinary team consensus.

The helpline manual was subsequently printed in book form. In addition to the flowcharts it also contains: (i) definitions of terminology commonly used in the context of schizophrenia, explained in brief, as well as definitions for other medical terminology used in the manual; (ii) tables listing general side-effects experienced when on antipsychotic medication, explaining these and giving guidance on management of possible serious problems; and (iii) alphabetical lists of trade and generic names of medications, as well as general guidelines on the use of antipsychotic medication.

During the process of compilation it was immediately recognised that owing to the huge amount of information contained in the manual, it would be more efficient if an Internet resource could be developed in conjunction with the helpline. …

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