A web-based intervention for relatives of people experiencing psychosis or bipolar disorder: design study using a user-centered approach

Background:Relatives of people experiencing bipolar mood episodes or psychosis face a multitude of challenges (eg, social isolation, limited coping strategies, and issues with maintaining relationships). Despite this, there is limited informational and emotional support for people who find themselves in supporting or caring roles. Digital technologies provide us with an opportunity to offer accessible tools, which can be used flexibly to provide evidence-based information and support, allowing relatives to build their understanding of mental health problems and learn from others who have similar experiences. However, to design tools that are useful to relatives, we first need to understand their needs.Objective:The aim of this study was to use a user-centered design approach to develop an accessible Web-based intervention, based on the Relatives Education And Coping Toolkit (REACT) booklet, to support the informational and emotional needs of relatives of people experiencing psychosis or bipolar disorder.

Methods: We engaged relatives of people with experiences of bipolar disorder or psychosis in workshops to identify their needs and design requirements for developing a Web-based version of a paper-based toolkit. We used a 2-phase qualitative approach to explore relatives’ views on content, design, and functionalities, which are considered to be engaging and useful in a Web-based intervention. In phase 1, we consulted 24 relatives in 2 workshops to better understand their existing support infrastructure, their barriers for accessing support, unmet needs, and relatives’ views on online support. On the basis of the results of these workshops, we developed a set of design considerations to be explored in a smaller workshop. Workshop 3 then involved working with 2 digitally literate relatives to design a usable and acceptable interface for our Web-based toolkit. Finally, in phase 2, we conducted a heuristic evaluation to assess the usability of the toolkit.

Results: Our findings indicated that relatives require technologies that (1) they can place their trust in, particularly when discussing a highly sensitive topic, (2) enable learning from the lived experiences of others while retaining confidentiality, and (3) they can work through at their own pace in a personalized manner.

Conclusions: Our study highlights the need for providing a trustworthy, supportive tool where relatives can engage with people who have similar experiences to their own. Our heuristic evaluation showed promise in terms of perceived usability of the REACT Web-based intervention. Through this work, we emphasize the need to involve stakeholders with various characteristics, including users with limited computer literacy or experience in online support.