Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. MATERIALS AND METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. DISCUSSION: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. CONCLUSION: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

Disability Justice and Anti-ableism for the Pediatric Clinician.

The impact of ableism on health care, and specifically the health of people with disabilities, is not only underrecognized, but misunderstood at a foundational level due to socially acceptable denial of anti-disability bias. For the pediatrician that seeks to learn about the value of anti-ableist approaches to health care and how it can promote child health, this article reviews the relationship between medical jargon and anti-disability bias, and provides a primer on disability justice, the medical versus social models of disability, and other scholarly concepts related to anti-ableism. The authors provide narrative examples of disability bias in clinical scenarios, and the article concludes with actionable recommendations on anti-ableist language etiquette and clinical best practices. Although ableism is a societal issue, pediatricians have a responsibility to recognize and address ableism as a threat to child health.

Concurrent Validity of Measures of Upper Extremity Function Derived from Videogame-Based Motion Capture for Children with Hemiplegia.

Objective: Pediatric hemiplegia is associated with wide-ranging deficits in arm and hand motor function, neg-atively impacting participation in daily occupations and quality of life. This study investigated whether performance measures generated during therapy videogame play by children with hemiplegia can be valid indicators of upper extremity motor function. Materials and Methods: Ten children with hemiplegia used a custom therapy game system alternatively using their affected and non-affected hand to provide motion capture data that spans a wide range of motor function status. The children also completed a series of standardized outcome measure assessments with each hand, including the Quality of Upper Extremity Skills Test, the Jebsen Taylor Hand Function Test, and the Wolf Motor Function Test. Results: Statistical analysis using the nonparametric Spearman rank correlation revealed high and significant correlation between videogame-derived motion capture measures, characterizing the speed and smoothness of movements, and the standardized outcome measure assessments. Conclusion: The results suggest that a low-cost motion capture system can be used to monitor a child's motor function status and progress during a therapy program.

Comparative effects of multilevel muscle tendon surgery, osteotomies, and dorsal rhizotomy on functional and gait outcome measures for children with cerebral palsy.

OBJECTIVE: To compare the impact of common surgical interventions (selective dorsal rhizotomy, muscle-tendon surgery, and osteotomies) for patients with cerebral palsy (CP) on Gross Motor Function Measure and temporal, kinematic, and kinetic gait variables as assessed via 3-dimensional motion analysis. DESIGN: Retrospective cohort study. SETTING: Motion analyses laboratory. PARTICIPANTS: Ninety-four patients with CP, 56 of whom underwent surgery (37, muscle-tendon surgery; 11, osteotomy; and 8, selective dorsal rhizotomy) and 38 of whom did not have surgery; the patients were ages 4-18 years, with a Gross Motor Function Classification System classification of I, II, or III. INTERVENTIONS: Single-event, multilevel muscle tendon surgery, selective dorsal rhizotomy, and osteotomy. MAIN OUTCOME MEASURES: Change scores (postintervention - preintervention) in Gross Motor Function Measure and temporal, kinematic, and kinetic gait variables. RESULTS: No statistically significant differences in change scores were found between groups in the Gross Motor Function Measure, velocity, or stride length measures after the observation period. The selective dorsal rhizotomy group had greater improvements in knee extension when compared with the nonsurgical group and greater hip and knee total range of motion during the gait cycle when compared with nonsurgical group and the muscle-tendon surgery and osteotomy cohorts. Lastly, the muscle-tendon surgery group had greater improvements in total knee range of motion compared with the nonsurgical group. CONCLUSIONS: Patients who undergo selective dorsal rhizotomy and, to a lesser extent, muscle tendon procedures demonstrate greater improvements in kinematic gait variables compared with nonsurgical interventions in patients with spasticity resulting from CP.