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.

Introduction to Disability and Antiableist Health Care: A Pilot, Student-Led Module for Preclinical Medical Students.

ABSTRACT: Physical medicine and rehabilitation physicians often care for disabled patients, who comprise America's largest marginalized population. Despite medical students' and physicians' discomfort with caring for disabled patients and the pervasiveness of ableism in health care, medical education lacks disability-focused education. Kern's approach to curriculum development and disability community input were used to design a three-part, elective curriculum for first-year medical students. Part one introduced disability models and language. Part two described how to perform a comprehensive history and physical examination for a disabled patient using ADEPT-CARE. Part three provided an overview of disability history and the disability rights movement. The curriculum's goal was to improve students' attitudes regarding disability health and self-perceived knowledge and confidence in caring for patients with disabilities. The curriculum was evaluated through presurvey and postsurvey. Students favorably reviewed the curriculum. One hundred percent of students ( n = 21) agreed or strongly agreed that the curriculum improved their knowledge of disability health, increased their perceived confidence in caring for patients with disabilities, and enhanced their medical education. There were no statistically significant differences in students' attitudes toward patients with disabilities after curriculum completion. Our asynchronous module provides one potential curriculum for increasing preclinical medical students' self-perceived knowledge of disability health.

Establishing the Need for Anticipatory Symptom Guidance and Networked Models of Disease in Adaptive Family Management Among Children With Medical Complexity: Qualitative Study.

BACKGROUND: Caregivers of children with medical complexity navigate complex family management tasks for their child both in the hospital and home-based setting. The roles and relationships of members of their social network and the dynamic evolution of these family management tasks have been underexamined. OBJECTIVE: The purpose of this study was to explore the structures and processes of family management among caregivers of children with medical complexity, with a focus on the underlying dynamic nature of family management practices and the role of members of their social network. METHODS: This study used a qualitative approach to interview caregivers of children with medical complexity and members of their social network. Caregivers of children with medical complexity were recruited through an academic Children's Hospital Complex Care Clinic in the mid-Atlantic region and interviewed over a period of 1 to 3 days. Responses were analyzed using constructivist grounded theory and situational analysis to construct a new conceptual model. Only caregiver responses are reported here. RESULTS: In total, 20 caregivers were included in this analysis. Caregiver perspectives revealed the contextual processes that allowed for practices of family management within the setting of rapidly evolving symptoms and health concerns. The dynamic and adaptive nature of this process is a key underlying action supporting this novel conceptual model. The central themes underpinning the adaptive family management model include symptom cues, ongoing surveillance, information gathering, and acute on chronic health concerns. The model also highlights facilitators and threats to successful family management among children with medical complexity and the networked relationship among the structures and processes. CONCLUSIONS: The adaptive family management model provides a basis for further quantitative operationalization and study. Previously described self- or family management frameworks do not account for the underlying dynamic nature of the disease trajectory and the developmental stage progression of the child or adolescent, and our work extends existing work. For future work, there is a defined role for technology-enhanced personalized approaches to home-based monitoring. Due to the disparities caregivers and the children in this population already experience, technology-enhanced approaches must be built alongside key stakeholders with an equity orientation to technology co-development. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/14810.

ADEPT-CARE: A pilot, student-led initiative to improve care for persons with disabilities via a novel teaching tool.

BACKGROUND: Over one-quarter of United States adults live with a disability. Despite persistent ableism, defined as discrimination and prejudice against people with disabilities, in healthcare, disability-focused training remains largely absent from medical education. OBJECTIVE: The aim of this study was to pilot and evaluate a novel teaching mnemonic (ADEPT-CARE) for performing a comprehensive history and physical exam for disabled patients. METHODS: In Spring 2022, first-year medical students at a suburban Mid-Atlantic institution could electively participate in a learning module that included ADEPT-CARE. Surveys were administered to students before and following exposure to the ADEPT-CARE protocol. RESULTS: Of 142 eligible students, 33 and 21 completed the pre- and post-surveys, respectively. The ADEPT-CARE protocol made sense to 95.2% of students. All (100%) students reported that they will use the ADEPT-CARE protocol in the assessment of patients with disabilities. Students were more likely to agree or strongly agree that they had a consistent approach or strategy in mind when assessing a patient with a disability after exposure to ADEPT-CARE (85.7% vs. 39.4%, respectively, p = 0.002). There was no statistically significant difference in students' perceived confidence in their ability to assess a patient with a disability after curriculum completion compared to before (85.7% vs. 81.8%, respectively, p = 1.0). CONCLUSIONS: The ADEPT-CARE protocol has the potential to be an effective teaching tool by providing a framework to equitably care for disabled patients. Future research should assess whether students' self-reported increased confidence and intention to utilize ADEPT-CARE translates into the clinical setting.

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.

COVID-19 and the need for disability conscious medical education, training, and practice.

The COVID-19 era exposes what was already a crisis in the medical profession: structural racism, ageism, sexism, classism, and ableism resulting in healthcare disparities for Persons with Disabilities (PWD). Early research highlights these disparities, but we do not yet know the full impact of this pandemic on PWD. Over the last 20 years, many medical schools have attempted to develop disability competency trainings, but discrimination and inequities remain, resulting in a pervasive distrust of medicine by the disability community at large. In this commentary, we suggest that disability competency is insufficient because the healthcare disparities experienced by PWD are not simply a matter of individual biases, but structural and systemic factors requiring a culture shift in the healthcare professions. Recognizing that disability is a form of diversity that is experienced alongside other systemic disadvantages like social class, race, age, sex, gender identity, and geographic location, we explore the transformative potential of disability conscious medical education, training, and practice that draws on insights from intersectional disability justice activism. Disability conscious medicine is a novel approach, which improves upon competency programs by utilizing disability studies and the principles of disability justice to guide us in the critique of norms, traditions, and institutions to more fully promote the respect, beneficence, and justice that patients deserve.

Self-Management Characterization for Families of Children With Medical Complexity and Their Social Networks: Protocol for a Qualitative Assessment.

BACKGROUND: Children with medical complexity (CMC) present rewarding but complex challenges for the health care system. Transforming high-quality care practices for this population requires multiple stakeholders and development of innovative models of care. Importantly, care coordination requires significant self-management by families in home- and community-based settings. Self-management often requires that families of CMC rely on vast and diverse social networks, encompassing both online and offline social relationships with individuals and groups. The result is a support network surrounding the family to help accomplish self-management of medical tasks and care coordination. OBJECTIVE: The goal of this study is to use a theoretically driven perspective to systematically elucidate the range of self-management experiences across families of CMC embedded in diverse social networks and contextual environments. This approach will allow for characterization of the structure and process of self-management of CMC with respect to social networks, both in person and digitally. This research proposal aims to address the significant gaps in the self-management literature surrounding CMC, including the following: (1) how self-management responsibilities are distributed and negotiated among the social network and (2) how individual-, family-, and system-level factors influence self-management approaches for CMC from a theoretically driven perspective. METHODS: This study will encompass a qualitative descriptive approach to understand self-management practices among CMC and their social networks. Data collection and analysis will be guided by a theoretical and methodological framework, which synthesizes perspectives from nursing, human factors engineering, public health, and family counseling. Data collection will consist of semistructured interviews with children, parents, and social network members, inclusive of individuals such as friends, neighbors, and community members, as well as online communities and individuals. Data analysis will consist of a combination of inductive and deductive methods of qualitative content analysis, which will be analyzed at both individual and multiadic levels, where interview data from two or more individuals, focused on the same experience, will be comparatively analyzed. RESULTS: This study will take approximately 18 months to complete. Our long-term goals are to translate the qualitative analysis into (1) health IT design guidance for innovative approaches to self-management and (2) direct policy guidance for families of CMC enrolled in Medicaid and private insurance. CONCLUSIONS: Multiple innovative components of this study will enable us to gain a comprehensive and nuanced understanding of the lived experience of self-management of CMC. In particular, by synthesizing and applying theoretical and methodological approaches from multiple disciplines, we plan to create novel informatics and policy solutions to support their care within home and community settings. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/14810.

Innovations With 3-Dimensional Printing in Physical Medicine and Rehabilitation: A Review of the Literature.

Created more than 30 years ago, 3-dimensional printing (3DP) has recently seen a meteoric rise in interest within medicine, and the field of Physical Medicine and Rehabilitation is no exception. Also called additive manufacturing (AM), the recent increase in the use of 3DP is likely due to lower-cost printers as well as breakthroughs in techniques and processing. This thematic narrative review serves to introduce the rehabilitation professional to 3DP technology and how it is being applied to orthoses, prostheses, and assistive technology (AT). The basics of the technology, as well as the benefits and challenges of using it within the rehabilitation framework, are described. Proponents of the technology suggest that 3DP offers not only a better way to make devices, but a better way to make improved devices. However, the strength of this claim has not been properly tested by the current literature. This narrative review evaluates the evidence and provides a discussion of possible implications for the rehabilitation professional.

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.

A comparison of acoustic and visual metrics of sperm whale longline depredation.

Annual federal stock assessment surveys for Alaskan sablefish also attempt to measure sperm whale depredation by quantifying visual evidence of depredation, including lip remains and damaged fish. A complementary passive acoustic method for quantifying depredation was investigated during the 2011 and 2012 survey hauls. A combination of machine-aided and human analysis counted the number of distinct "creak" sounds detected on autonomous recorders deployed during the survey, emphasizing sounds that are followed by silence ("creak-pauses"), a possible indication of prey capture. These raw counts were then adjusted for variations in background noise levels between deployments. Both a randomized Pearson correlation analysis and a generalized linear model found that noise-adjusted counts of "creak-pauses" were highly correlated with survey counts of lip remains during both years (2012: r(10) = 0.89, p = 1e-3; 2011: r(39) = 0.72, p = 4e-3) and somewhat correlated with observed sablefish damage in 2011 [r(39) = 0.37, p = 0.03], but uncorrelated with other species depredation. The acoustic depredation count was anywhere from 10% to 80% higher than the visual counts, depending on the survey year and assumptions employed. The results suggest that passive acoustics can provide upper bounds on depredation rates; however, the observed correlation breaks down whenever three or more whales are present.