Learning experience design of an mHealth self-management intervention for adolescents with type 1 diabetes.

Type 1 diabetes (T1D) is a lifelong and chronic condition that can cause severely compromised health. The T1D treatment regimen is complex, and is a particular challenge for adolescents, who frequently experience a number of treatment adherence barriers (e.g., forgetfulness, planning and organizational challenges, stress). Diabetes Journey is a gamified mHealth program designed to improve T1D self-management through a specific focus on decreasing adherence barriers and improving executive functioning skills for adolescents. Grounded in situativity theory and guided by a sociotechnical-pedagogical usability framework, Diabetes Journey was designed, developed, and evaluated using a learning experience design approach. This approach applied design thinking methods within a Successive Approximation Model design process. Iterative design and formative evaluation were conducted across three design phases, and improvements were implemented following each phase. Findings from the user testing phase indicate Diabetes Journey is a user-friendly mHealth program with high usability that holds promise for enhancing adolescents' T1D self-management. Implications for future designers and researchers are discussed regarding the social dimension of the sociotechnical-pedagogical usability framework. An extension to the framework is proposed to extend the social dimension to include socio-cultural and contextual considerations when designing mHealth applications. Consideration of the pedagogical and sociocultural dimensions of learning is imperative when developing psychoeducational interventions.

Racial Disparities in Medication Adherence Barriers: Pediatric Epilepsy as an Exemplar.

OBJECTIVE: To evaluate how racial disparities in medication adherence barriers relate to key clinical outcomes (i.e., seizure control and adherence) in pediatric epilepsy and to identify the most critical barriers in determining health outcomes in Black youth and White youth. METHODS: This observational study included a sample of youth aged 2-17 years with epilepsy obtained by combining data from four different studies. A total of 226 caregivers and 43 adolescents reported on adherence barriers. An electronic monitor was used to measure adherence to the primary antiepileptic drug. Racial disparities in individual barriers were examined. The relative importance of different types of barriers in determining clinical outcomes was evaluated in both Black and White youth. RESULTS: Adherence barriers, including running out of medications, access to pharmacies, competing demands, and difficulty swallowing, disproportionally affected Black children with epilepsy compared to White children. System- and community-level barriers emerged as the most important in determining seizure outcomes among Black youth. Both system- and individual-level barriers, on the other hand, were important for adherence outcomes. CONCLUSIONS: System- and community-level barriers, as opposed to individual-level barriers, are more highly endorsed by Black families compared to White families. These barriers are also the most critical in driving seizure outcomes among Black youth. There is a critical need to shift from a primary focus on individual-level barriers to an approach that deliberately targets larger systemic barriers to reduce the existing adherence and health disparities that affect Black children with pediatric conditions.

Learning experience design of an mHealth intervention for parents of children with epilepsy.

PURPOSE: The purpose of this paper is to describe the iterative design, development, and evaluation of a novel mHealth learning environment for parents of children with epilepsy. The mHealth learning environment is a component of a broader behavioral intervention called eACT (Epilepsy Adherence in Children and Technology), which seeks to improve antiepileptic drug adherence in children with epilepsy. The eACT mHealth learning environment integrates theoretical principles from the learning sciences with user-centered design methods and advanced learning technologies to provide an efficient and appealing learning experience that is specifically tailored to adult learners. METHODS: The eACT mHealth learning environment was developed by a multidisciplinary team of experts across three major phases including: 1) preparation, 2) iterative design, and 3) iterative development. The preparation phase included developing user personas and conducting focus groups, which identified user needs and use cases for the product. The iterative learning experience design process made use of rapid prototypes in which the product design was improved between versions, resulting in a final design proof. Usability and user experience methods were deployed to evaluate the system during the iterative development phase. RESULTS: Results from three phases of iterative design and development are presented through user personas, usability data, and qualitative analysis. Findings suggest the eACT mHealth learning environment is highly usable and relevant to the unique needs of adult caregivers of children with epilepsy. Findings also suggest that user experience was largely positive. CONCLUSIONS: This paper reveals key insights about how formative learning experience design processes can lead to highly relevant and usable interventions for adult learners.

A Longitudinal Assessment of Parenting Stress in Parents of Children with New-Onset Epilepsy.

OBJECTIVE: Parents of children with newly diagnosed epilepsy may experience elevated parenting stress. The present study examined trajectories of parenting stress over time and identified modifiable predictors of these trajectories. METHODS: Parents of youth with epilepsy (N = 102; 2-12 years old) completed questionnaires 1, 4, 13, 19, and 25-months post-diagnosis, including measures of parenting stress, family functioning, child psychosocial functioning, sociodemographics, and perceived stigma. Latent growth curve models (LGCM) were used to examine domains of parenting stress over time. RESULTS: At baseline, 25-48% of parents reported elevated parenting stress. LGCMs revealed that the parent and child domains of parenting stress were generally stable across time. However, life stress was more variable across time, and parents with higher initial life stress had a greater reduction in life stress over time. Socioeconomic status was identified as a non-modifiable predictor of life stress. Family functioning was associated with greater parenting stress in the parent domain. Child psychosocial functioning was associated with greater parenting stress in the parent and child domains. CONCLUSIONS: Parenting stress was elevated for a subset of families and appeared to be relatively stable over time, with the exception of life stress, which was more variable. With early screening, child factors and parent appraisals of epilepsy may be valuable targets for clinical intervention with families of children with epilepsy.

The development of a social norms adherence intervention for adolescents with epilepsy.

INTRODUCTION: Adherence is suboptimal in adolescents with epilepsy. Social norms comparison (i.e., feedback about someone else's behavior related to one's own behavior) strategies may be beneficial in improving medication adherence. Using a novel model of behavioral intervention development, the aim of the current study was to create a social norms intervention for adolescents with epilepsy via focus groups and usability studies. METHODS: A focus group, individual interviews, short-term usability, and extended usage testing studies were conducted. Across all study phases, content and images of intervention components were displayed to participants as mock-ups in PowerPoint slide decks. After each phase, updated iterations were shown to participants to refine the intervention. Several questionnaires were completed by adolescents and caregivers to characterize the samples. RESULTS: Twelve adolescents participated in the focus group/individual interviews and usability studies. The final Behavioral Economic Adherence for Teens (BEAT) intervention consists of a text messaging system and a graphical user interface. General feedback indicated the need for simplicity and ease of use regarding obtaining the graphical messages (e.g., no extra login and passwords); engaging visual images; and weekly comparisons of a target patient's medication adherence to other adolescents' performance. The average system usability system (SUS) rating was 88.3 + 3.8. CONCLUSIONS: Our final intervention had high usability ratings and was perceived as engaging and easy to understand. An important next step is to test the BEAT intervention in a Phase 2 randomized trial.