Ward, Teresa MZhai, Shumenghui2023-08-142023-08-142023Zhai_washington_0250E_25336.pdfhttp://hdl.handle.net/1773/50141Thesis (Ph.D.)--University of Washington, 2023Background: Sleep deficiency is highly comorbid in children with Juvenile Idiopathic Arthritis (JIA) and associated with poorer health-related quality of life, more arthritis symptoms, and healthcare utilization. Despite the prevalence of sleep deficiency in JIA, little attention has been given to supporting children and parents in managing it by enhancing their self-efficacy, problem-solving, and goal-setting skills. Guided by Social Cognitive Theory (SCT), Parent-Child Shared Management perspectives, and the Human-Centered Design (HCD) approach, we developed and pilot-tested the Sleep Shared-Management Intervention (SLEEPSMART) to support sleep health among JIA children and their families, reformulated SCT to inform future sleep interventions, and proposed a model to guide the design, development and evaluation of the behavioral interventions. Purpose: The overall purpose of the dissertation was to understand how a novel technology-enabled sleep intervention RCT can better support JIA children’s sleep and promote future sleep intervention through theory reformulation and HCD-based evaluation framework development. Methods: The first part of the dissertation examined the feasibility, acceptability, and preliminary efficacy of SLEEPSMART among fifty 8 -13 years children with JIA and sleep deficiency and a parent. Forty-four parent-child dyads were randomized to the SLEEPSMART or control group: the SLEEPSMART group received a 6-week internet-delivered sleep coach-supported intervention, and the control group received routine clinical care. We used the percentage of eligible, enrolled, and retained dyads as feasibility, dyads who completed at least one module as engagement, and the Treatment Evaluation Inventory and dyads’ exit interview for usefulness and acceptability. Sleep (total sleep time and sleep efficiency measured by actigraphy) and shared management (self-efficacy, self-regulation, and belief/attitude towards sleep) outcomes were examined at baseline, immediately post-intervention, and one-month post-intervention using Generalized Estimating Equations (GEE). When using SCT to guide the development of SLEEPSMART, we found SCT was rarely comprehensively analyzed and evaluated in the context of pediatric sleep health. To further understand SCT and advance sleep research, we used Fawcett’s framework to analyze and evaluate SCT in the second part of the dissertation. We proposed a reformulation of SCT to better inform sleep research. To assess and refine the SLEEPSMART after pilot testing, we developed a conceptual model for evaluating technology-enabled behavioral intervention by integrating HCD and implementation science outcomes. Results: Parent-child dyads perceived SLEEPSMART as feasible, acceptable, and useful. Of the 50 dyads enrolled, 88% completed the baseline, 80% completed all intervention modules and surveys, 88% achieved at least one module, 75% of children and 89% of parents reported high acceptance, and 89% of parents and 80% of children would recommend SLEEPSMART to others. The main themes and subthemes of satisfaction, usefulness, and improvement that emerged from the exit interview highlighted the strengths and areas for future refinement. SLEEPSMART also significantly improved dyads’ sleep, self-efficacy, and healthy sleep beliefs. In the second part of the dissertation, based on theory analysis and evaluation, SCT is a middle-range theory emphasizing the concept of cognition in executing behaviors. SCT addresses the metaparadigm nursing concepts of triadic determinism between people, behavior, and environment on the philosophical basis of human agency. The key concepts of SCT are self-efficacy, self-regulation, outcome expectation, and observational learning, nested within a contextualism worldview. SCT has overall strong theoretical foundations for explaining, predicting, and changing human behavior, and it has demonstrated considerable social significance and a powerful theoretical impact on nursing empirical research. However, SCT is individually focused and does not account for interdependence within relationships. We proposed reformulating SCT by integrating Parent-Child Shared Management (PCSM). PCSM is a concept that reflects the shared responsibility and interdependence that parent and child have for managing child health. SCT-SM informed interventions that engage parents and children in active roles in managing sleep have potential sustainable effects in improving sleep and quality of life. To evaluate the development process of SLEEPSMART, informed by usability and IS outcomes, we proposed a heuristic model that can guide the development and evaluation of interventions: the USIS model, in which Usability and IS are combined. USIS has five domains: 1) User-Centeredness (empathy, engagement, and equity), 2) Efficiency (cost, timeliness, and rapidity), 3) Feasibility (learnability, memorability, error reduction, low cognitive load), 4) Satisfaction (acceptability, appropriateness), and 5) Fidelity (adoption, penetration, sustainability). Applying USIS to evaluate SLEEPSMART, we concluded that user-centeredness was prioritized throughout the design and development process using various HCD methods. The design decision based on users’ input was consistently maintained and consolidated. One area that needs improvement is that participants should include diverse populations with diverse backgrounds and represent different cultural perspectives. Conclusions: SLEEPSMART, the first technology-based sleep shared-management intervention for JIA children and their parents, is approved as feasible, acceptable, and effective in improving dyads’ sleep and enhancing shared-management skills. By employing HCD approaches and PCSM, SLEEPSMART is promising to support pediatric sleep research in larger-scale trials. The reformulated SCT-SM allows researchers to better understand PCSM in pediatric sleep. We expect a sleep intervention guided by SCT-SM will improve sleep quality, enhance communication, and boost the capacity to manage chronic conditions in children and parents. We also anticipate that the reformulated SCT-SM has the potential to generalize to other pediatric chronic conditions by providing a framework for a better understanding of the shifting roles/responsibilities between parents and children. Towards the intervention evaluation and refinement, our newly developed USIS model offers specific tools to design better interventions and evaluate existing interventions to improve health innovations’ translation into practice. We believe the USIS model offers a pathway for enhancing innovation advancement by incorporating the processes and tools from HCD and IS.application/pdfen-USnoneNursingThesis