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Background Electronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial. Objective The objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers’ experiences of managing their child’s asthma, and (2) what do parents recommend for improving the intervention in the future? Methods Parents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach. Results Interview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child’s health, (4) emotional impact of the intervention, (5) child’s engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned. Conclusions Parents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma.

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Purpose Self-efficacy is important for managing chronic conditions; however, its measurement in pediatric healthcare settings remains rare. The goal of this project was to adapt an existing disease-agnostic adult self-efficacy patient reported outcome (PRO) measure to enhance suitability of items for measuring the self-efficacy of parents that manage their children’s health conditions. Methods We adapted the existing Patient-Reported Outcomes Measurement Information System® (PROMIS®) adult self-efficacy healthcare measure to parental voice. First, a targeted literature review informed rephrasing of the adult items and identification of new pediatric-specific content. The initial item pool was revised based on input from 12 multidisciplinary experts. Next cognitive interviews of adapted items were simultaneously conducted with English and Spanish-speaking parents of pediatric patients with a range of chronic and/or disabling conditions recruited from a Midwestern children’s hospital to finalize the measure. Results Findings resulted in an initial item pool of 33 pediatric-specific items which were narrowed to 31 draft items based on expert input. Parent cognitive interview findings (N = 26) informed further item reduction resulting in a final measure consisting of 30 items representing nine domains. Fourteen items are relevant to children regardless of condition severity (e.g., health care information/decision making; symptom identification/management) and 16 items are relevant to children with specific health care needs (e.g., medication usage, equipment). Conclusion We conducted a first step in developing a condition-agnostic, PRO measure of parental self-efficacy managing their children’s chronic and/or disabling conditions that is acceptable and understandable to English and Spanish-speaking parents.

Despite the rising prevalence of children with medical complexity who need extensive medical care at home, the literature evaluating pediatric home healthcare has not been well summarized. Our objective was to systematically review the evidence-base of pediatric home healthcare to understand what is currently know about access and quality of home healthcare for children. Pubmed, Ovid Medline, Embase, CINAHL, Cochrane Library, Proquest Dissertations and Theses Global were searched for studies in the United States, United Kingdom, Canada, and Australia English publications (1980-2020) regarding children (≤18 years) using shift-based home healthcare services. Blinded independent review was conducted followed by extraction of study characteristics including how each study examined access and/or quality, which was categorized using the National Academy of Medicine quality dimensions. Of 9533 abstracts, 101 were included. Most were US (82%) and regional (72%) studies. Half (54%) focused on home nursing followed by home services generally (43%). The majority (77%) evaluated access and patient-family centeredness (62%); their results identified consistent limitations in access and quality resulting in negative impacts on patients and families. Less than 20% of publications addressed safety, effectiveness or equity. Bias scoring found that quantitative studies were universally weak, but qualitative studies were mostly moderate or strong. Results are limited by design heterogeneity and exclusion of training research. While research in pediatric home healthcare has increased, studies remain observational and rarely evaluate quality in reproducible ways. More rigorous measures and interventional research are needed to improve this healthcare sector for children.