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Open Access Research article

Evaluation of the acceptability and usefulness of an information website for caregivers of people with bipolar disorder

Lesley Berk1234*, Michael Berk12345, Seetal Dodd134, Claire Kelly268, Stefan Cvetkovski27 and Anthony Francis Jorm267

Author Affiliations

1 IMPACT Strategic Research Centre, School of Medicine, Deakin University, Geelong, Victoria, Australia

2 Orygen Youth Health Research Centre, Centre for Youth Mental Health, University of Melbourne, Parkville, Victoria, Australia

3 Department of Psychiatry, University of Melbourne, Parkville, Victoria, Australia

4 Swanston Centre, Barwon Health, Geelong, Victoria, Australia

5 Florey Institute for Neuroscience and Mental Health, University of Melbourne, Parkville, Victoria, Australia

6 Mental Health First Aid, Parkville, Victoria, Australia

7 Melbourne School of Population Health, University of Melbourne, Parkville, Victoria, Australia

8 School of Psychology, Deakin University, Melbourne, Victoria, Australia

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BMC Medicine 2013, 11:162  doi:10.1186/1741-7015-11-162

Published: 11 July 2013

Abstract

Background

Bipolar disorder is associated with extreme mood symptoms, disability and suicide risk. Close family or friends often have a primary role in supporting an adult with bipolar disorder. However, not all support is helpful and there is little publicly accessible evidence-based information to guide caregivers. Caregiver burden increases the risk of caregiver depression and health problems. To help fill the information gap, expert clinicians, caregivers and consumers contributed to the development of guidelines for caregivers of adults with bipolar disorder using the Delphi consensus method. This paper reports on an evaluation of the acceptability and usefulness of the online version of the guidelines, http://www.bipolarcaregivers.org webcite.

Methods

Visitors to the website responded to an initial online survey about the usefulness of the information (Nā€‰=ā€‰536). A more detailed follow-up feedback survey was emailed to web users who were adult caregivers of adults with bipolar disorder a month later (Nā€‰=ā€‰121). The feedback was analyzed quantitatively and qualitatively to establish user appraisals of the online information, whether and how caregivers applied the information and ways it could be improved.

Results

The majority of users (86.4% to 97.4%) found the various sections of the website useful. At follow-up, nearly 93% of caregivers reported that the information was relevant to them and 96% thought it would help others. Most respondents said that the information was supportive and encouraged adaptive control appraisals. However, a few respondents who were experiencing complex family problems, or who cared for a person with severe chronic bipolar disorder did not appraise it as positively. Nevertheless, over two-thirds of the caregivers reported using the information. Optional interactive features were recommended to maximize benefits.

Conclusions

Overall, http://www.bipolarcaregivers.org webcite was appraised positively and used. It appears useful to close family and friends seeking basic information and reassurance, and may be an inexpensive way to disseminate guidelines for caregivers. Those who care for people with more severe and chronic bipolar disorder, or who have complex family problems might benefit from more specialized interventions, suggesting the importance of a stepped-care approach to supporting caregivers. The potential of evidence-based, collaboratively developed information websites to enhance caregiver and consumer outcomes merits further investigation.

Keywords:
Bipolar disorder; Caregiver burden; Caregivers; Control appraisals; Disseminate guidelines; Evaluation by users; Guidelines for caregivers; Information website; Website evaluation; Website for caregivers