3 Participatory design for and with patients with low health literacy 63 However, the findings of this study should be interpreted in the context of its limitations. Like most studies that address LHL, recruitment was challenging. Having practice nurses identify and invite patients for participation was effective. However, it could also have led to selection bias, resulting in, for example, people who were above average engaged with their health. Moreover, recruitment was intensive as it required efforts to build rapport and trust and resulted in a relatively small number of participants. The small sample size should be considered regarding the representativeness of the acquired insights for the adherence intervention for patients with asthma and with LHL. In addition, researchers should be mindful in adapting the practical implications mentioned in this paper to fit their context and target group. While the study provides insight into the practical implications of using participatory methods with people with LHL, we did not thoroughly assess the impact of this approach. Previous research has shown that participatory design can improve the process on many levels. It improves participant advocacy, trust, and sense of purpose; leads to better usability and desirability of the intervention; and achieves better health outcomes, equity, and access (Jacob et al., 2022). Therefore, future researchers could set the next step by studying if a participatory process leads to more desirable and effective health interventions for people with LHL. An important facet of participatory design that was not integrated into our approach is allowing the participants to “make” and embody thoughts in physical artifacts (Brandt et al., 2012). In this study, the “making” stages (e.g., ideating and prototyping) were done without the active involvement of people with LHL. Engaging participants in co-creating prototypes helps to generate ideas for the physical manifestation of the intervention and has been done to align interventions to the needs of disadvantaged groups (Bollard & Magee, 2020; Sanders et al., 2010). Considering the nonverbal and tangible nature of such activities, these could have yielded fruitful interactions. 3.5 Conclusion In this study, we demonstrated a participatory design approach for and with people with LHL. We showed how the participatory activities could result in engagement and mutual understanding within the research process. The eHealth intervention concept resulting from this design process was perceived as an acceptable solution that creates awareness about medication adherence through understandable feedback on medication use and asthma symptoms. The participatory methods applied in this study provide a first step and inspiration for succeeding efforts to help overcome common challenges in the involvement of people with LHL in the design of eHealth interventions.
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