JMIR Publications

ABSTRACT

Background:

Patient education has taken center stage in successfully shared decision making between patients and health care providers. However, little is known about how patients with bipolar disorder typically obtain information on their illness and on treatment options available to them.

Objective:

To obtain the perspectives of patients with bipolar disorder and their family members on preferred and most effectively used information channels to inform themselves about bipolar disorder and the available treatment options.

Methods:

We conducted nine focus groups in Montana, New Mexico, and California, in which we surveyed 84 individuals, including patients with bipolar disorder and family members of patients with bipolar disorder. The participants were recruited using NAMI mailing lists and websites. Written verbatim responses to semi-structured questionnaires were analyzed using summative content analysis based on grounded theory. Two annotators coded and analyzed the data on the sentence or phrase level to create themes. Relationships between demographics and information channel were also examined using the chi-square and Fisher’s exact tests.

Results:

The focus group participants mentioned a broad range of information channels that had been successfully used in the past and that could be recommended for future information dissemination. The majority of participants used providers (74%) and internet-based resources (75%) as their main information sources. There was no association between internet use and basic demographics, such as age or geographical region of the focus groups. Patients considered time constraints and the fast pace in which an overwhelming amount of information is often presented by the provider as major barriers to successful provider-patient interactions. If used, the participants perceived information obtained through web-based channels as more helpful than information received in the provider’s office (P <.05).

Conclusions:

Increasingly, web-based resources are used by patients with bipolar disorder and their family members to educate themselves about the disease and its treatment. While provider-patient interactions are frequently perceived as burdened with time constraints, web-based information sources are considered as reliable and helpful. Future research should explore how high-quality websites could be used to empower patients and improve provider-patient interactions with the goal of enhancing shared decision making between patients and providers.