Jasper Faber

3 Participatory design for and with patients with low health literacy 51 3.1 Introduction Over the past decades, digital health (eHealth) interventions have been developed to support self-management. Such interventions can combine patient monitoring and education and include multiple behavior change strategies (Hamine et al., 2015; Morrison et al., 2014; Timmers et al., 2020; van der Kleij et al., 2019; Webb et al., 2010). Examples of such applications are SMS text messaging systems to reinforce self-management skills, pill boxes generating alert messages when medication is missed, and interactive voice responses (Pouls et al., 2021). One specific group of people that would benefit from such interventions are people with low health literacy (LHL). A large-scale survey showed that, in Europe, nearly half of all adults reported having problems with health literacy (Sørensen et al., 2015). People with LHL have problems in obtaining, processing, and understanding basic health information and communicating their needs to health care professionals (HCPs) (Ratzan, 2001). Furthermore, LHL is associated with lower patient activation. Patient activation refers to the “knowledge, skills, and confidence” of a person in managing their health and has also been called the “mindset” needed to change behavior (Hibbard et al., 2005; Yadav et al., 2018; Yadav et al., 2020). This is amplified by the fact that people with LHL have differentiating illness perceptions and beliefs about their medication (Brandstetter et al., 2017; Federman et al., 2013; Kale et al., 2015; Soones et al., 2017). As a result, they experience difficulties in following treatment recommendations, for example taking medication as prescribed (Apter et al., 2013; Mancuso & Rincon, 2006; Rosas-Salazar et al., 2012). Approximately 50% of the people taking medication for chronic illnesses such as chronic obstructive pulmonary disease, diabetes, or cardiovascular disease are considered nonadherent (Burkhart & Sabate, 2003). Medication nonadherence has significant impact on patient’s quality of life and has been shown to lead to poor health outcomes and increased use of health care services (Chisholm-Burns & Spivey, 2012). Especially medication adherence in patients with asthma is consistently low, which results in unfavorable health outcomes such as increase in experience of symptoms and hospitalization (Murphy et al., 2012). Previous reviews have shown promising results on the effectiveness of eHealth interventions to enhance patients’ adherence to asthma medication (Jeminiwa et al., 2019; Linn et al., 2011; Pouls et al., 2021; van Buul et al., 2020). Yet, these interventions are mostly designed for patients with sufficient motivation, health literacy, and self-management skills and fail to address the needs, skills, and preferences of patients with LHL.

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