JMIR Publications

ABSTRACT

Background:

Self-monitoring of symptoms is a cornerstone of psychological interventions in bipolar disorder (BD), but individuals with lived experience also value tracking holistic outcomes such as quality of life (QoL). Importantly, self-monitoring is not always experienced positively by people with BD, and may have lower than expected rates of engagement. Before progressing QoL tracking tools, it is therefore important to explore user perspectives to identify possible risks/benefits, optimal methods to support engagement, and possible avenues to integrate QoL self-monitoring practices into clinical work.

Objective:

The aim of the present study was to conduct a qualitative exploration of how individuals with BD engaged with a web-based version of a BD-specific QoL self-monitoring instrument, the QoL Tool.

Methods:

Forty-three individuals with BD engaged with a self-management intervention with an optional web-based QoL self-assessment tool as part of an overarching mixed-methods study. Individuals were later interviewed about personal experiences of engagement with the intervention, including experiences of gauging own QoL. Thematic analysis was used to identify salient aspects of the experience of QoL self-monitoring in BD.

Results:

Four categories describing people’s experiences of QoL self-monitoring were identified: 1) Breadth of QoL monitoring, 2) Highlighting the positive, 3) Connecting self-monitoring to action, and 4) Self-directed patterns of use.

Conclusions:

The findings of this research generate novel insights into ways in which individuals with BD experience web-based QoL self-assessment tool. The value of tracking a breadth of domains was an overarching aspect, facilitating both the identification of areas of strength and identifying life domains in need of intervention. Importantly, monitoring QoL appeared to have an inherently therapeutic quality, through validating areas of flourishing and reinforcing self-management efforts. This contrasts evidence suggesting symptom tracking may be distressing due to its focus on negative experiences, and positions QoL as a valuable adjunctive target of observation in BD. Flexibility and personalisation of use of the QoL Tool were key to engagement, informing considerations for healthcare providers wishing to support self-monitoring and future research into web or mobile phone based applications.