JMIR Publications

ABSTRACT

Background:

Sjögren’s syndrome (SS) is the second most common autoimmune rheumatic disease, and the range of symptoms includes fatigue, dryness, sleep disturbances, and pain. Smartphone applications (apps) may help deliver a variety of cognitive and behavioural techniques to support self-management in SS. However, app-based interventions must be carefully designed to promote engagement and motivate behaviour change.

Objective:

To explore self-management approaches and challenges experienced by people living with SS and produce a corresponding set of design recommendations that inform the design of an engaging, motivating, evidence-based self-management app for those living with SS.

Methods:

We conducted a series of eight co-design workshops and an additional three interviews with participants who were unable to attend a workshop. These were audio recorded, transcribed, and initially thematically analysed using an inductive approach. Themes were then mapped to the self-determination theory (SDT) domains of competency, autonomy, and relatedness.

Results:

The mental, physical, and social work that the condition required was never stable, never predictable, and never fully over. Participants employed a wide variety of techniques to self-manage their symptoms, however their sense of competency was undermined by the complexity and interconnected nature of their symptoms and affected by interactions with others. The daily contexts in which this labour was taking place revealed ample opportunities to use digital health aids. The lived experience of participants showed that the constructs of competency, autonomy and relatedness existed in a complex equilibrium with each other. At times, they were disrupted by tensions while on other occasions they worked together harmoniously.

Conclusions:

A SS self-management app needs to recognise the complexity and overlap of symptoms and the complexities of managing the condition in daily life. Identifying techniques which target several symptoms at once may reduce overwhelm for users. Including techniques which support assertiveness and communication with others about the condition, its symptoms and users’ limitations, may support users in their interactions with others and support engagement in symptom management strategies. For digital health aids (such as self-management apps) to provide meaningful support, they should be designed according to human needs of competence, autonomy, and relatedness. However, the complexities between the three SDT constructs should be carefully considered, as they present both design difficulties but also opportunities.