Evolution of a System to Monitor Infant Neuromotor Development in the Home: Lessons from COVID-19.

In the nine months leading up to COVID-19, our biomedical engineering research group was in the very early stages of development and in-home testing of HUGS, the Hand Use and Grasp Sensor (HUGS) system. HUGS was conceived as a tool to allay parents' anxiety by empowering them to monitor their infants' neuromotor development at home. System focus was on the evolving patterns of hand grasp and general upper extremity movement, over time, in the naturalistic environment of the home, through analysis of data captured from force-sensor-embedded toys and 3D video as the baby played. By the end of March, 2020, as the COVID-19 pandemic accelerated and global lockdown ensued, home visits were no longer possible and HUGS system testing ground to an abrupt halt. In the spring of 2021, still under lockdown, we were able to resume recruitment and in-home testing with HUGS-2, a system whose key requirement was that it be contactless. Participating families managed the set up and use of HUGS-2, supported by a detailed library of video materials and virtual interaction with the HUGS team for training and troubleshooting over Zoom. Like the positive/negative poles of experience reported by new parents under the isolation mandated to combat the pandemic, HUGS research was both impeded and accelerated by having to rely solely on distance interactions to support parents, troubleshoot equipment, and securely transmit data. The objective of this current report is to chronicle the evolution of HUGS. We describe a system whose design and development straddle the pre- and post-pandemic worlds of family-centered health technology design. We identify and classify the clinical approaches to infant screening that predominated in the pre-COVID-19 milieu and describe how these procedural frameworks relate to the family-centered conceptualization of HUGS. We describe how working exclusively through the proxy of parents revealed the family's priorities and goals for child interaction and surfaced HUGS design shortcomings that were not evident in researcher-managed, in-home testing prior to the pandemic.

Relationship-driven, family-centered care via TelePT: Reflections in the wake of COVID-19.

In response to the throttling of children's therapy programs precipitated by COVID-19 shutdowns, interest in the use of telehealth has increased among service providers at both the clinical and administrative levels. TelePT promises to be particularly appropriate in devising programs of on-going, therapeutic exercise interventions for children with neuromotor disorders. From the lay perspective, physical/physiotherapy (PT) which is seemingly characterized by the "hands-on," and corrective approach to managing impairments, makes it a counter-intuitive candidate for delivery over telehealth. Over the past decades, however, PT as a discipline has increasingly adhered to a relationship-driven, family-centered model of intervention. This model is "hands-off," figuratively if not always literally, and hence is not necessarily disconsonant with delivery mediated by telehealth technology. The current study explores in-depth the experiences and reflections of seven practicing therapists, on the impact of telehealth, telePT on the operationalization of relationship-based, family-centered methods into therapy. Interpretative phenomenological analysis was selected as the analytic method for understanding participants' experience providing services using both distance and standard face-to-face practice modalities. Results identified eight principal themes emerging from participants' descriptions of their experience of delivering therapy over telePT. Four of these themes correspond to the tenets of relationship-driven, family-centered care identified across four frameworks applied to pediatric rehabilitation. The remaining four themes focus on the particularities of the telePT modality and its viability in clinical practice. The ability telePT afforded to "see into the child's environment" emerged arguably as the greatest value of the modality in patient care. It revealed to therapists so much that they did not know about their patients' progress and, more strikingly, had not realized they did not know. TelePT provides a unique window into the child's functioning in the hours he is not in therapy. Given its potential in parent-therapist relationship building, assuring the ecological validity of therapy programs, and the empowerment of families who seek it, telePT is likely to be part of the future of PT and one driver of its evolution as a profession. There is a compelling case to retain telePT modalities offering them alongside in-person formats for convenience, safety, and service quality enhancement.

Characterization of Infants' General Movements Using a Commercial RGB-Depth Sensor and a Deep Neural Network Tracking Processing Tool: An Exploratory Study.

Cerebral palsy, the most common childhood neuromotor disorder, is often diagnosed through visual assessment of general movements (GM) in infancy. This skill requires extensive training and is thus difficult to implement on a large scale. Automated analysis of GM performed using low-cost instrumentation in the home may be used to estimate quantitative metrics predictive of movement disorders. This study explored if infants' GM may be successfully evaluated in a familiar environment by processing the 3D trajectories of points of interest (PoI) obtained from recordings of a single commercial RGB-D sensor. The RGB videos were processed using an open-source markerless motion tracking method which allowed the estimation of the 2D trajectories of the selected PoI and a purposely developed method which allowed the reconstruction of their 3D trajectories making use of the data recorded with the depth sensor. Eight infants' GM were recorded in the home at 3, 4, and 5 months of age. Eight GM metrics proposed in the literature in addition to a novel metric were estimated from the PoI trajectories at each timepoint. A pediatric neurologist and physiatrist provided an overall clinical evaluation from infants' video. Subsequently, a comparison between metrics and clinical evaluation was performed. The results demonstrated that GM metrics may be meaningfully estimated and potentially used for early identification of movement disorders.

Toward Evaluation of the Subjective Experience of a General Class of User-Controlled, Robot-Mediated Rehabilitation Technologies for Children with Neuromotor Disability.

Technological advances in game-mediated robotics provide an opportunity to engage children with cerebral palsy (CP) and other neuromotor disabilities in more frequent and intensive therapy by making personalized, programmed interventions available 24/7 in children's homes. Though shown to be clinically effective and feasible to produce, little is known of the subjective factors impacting acceptance of what we term assistive/rehabilitative (A/R) gamebots by their target populations. This research describes the conceptualization phase of an effort to develop a valid and reliable instrument to guide the design of A/R gamebots. We conducted in-depth interviews with 8 children with CP and their families who had trialed an exemplar A/R gamebot, PedBotHome, for 28 days in their homes. The goal was to understand how existing theories and instruments were either appropriate or inappropriate for measuring the subjective experience of A/R gamebots. Key findings were the importance of differentiating the use case of therapy from that of assistance in rehabilitative technology assessment, the need to incorporate the differing perspectives of children with CP and those of their parents into A/R gamebot evaluation, and the potential conflict between the goals of preserving the quality of the experience of game play for the child while also optimizing the intensity and duration of therapy provided during play.

The incorporation of emotion-regulation skills into couple- and family-based treatments for post-traumatic stress disorder.

Post-traumatic stress disorder (PTSD) is a disabling, potentially chronic disorder that is characterized by re-experience and hyperarousal symptoms as well as the avoidance of trauma-related stimuli. The distress experienced by many veterans of the Vietnam War and their partners prompted a strong interest in developing conjoint interventions that could both alleviate the core symptoms of PTSD and strengthen family bonds. We review the evolution of and evidence base for conjoint PTSD treatments from the Vietnam era through the post-911 era. Our review is particularly focused on the use of treatment strategies that are designed to address the emotions that are generated by the core symptoms of the disorder to reduce their adverse impact on veterans, their partners and the relationship. We present a rationale and evidence to support the direct incorporation of emotion-regulation skills training into conjoint interventions for PTSD. We begin by reviewing emerging evidence suggesting that high levels of emotion dysregulation are characteristic of and predict the severity of both PTSD symptoms and the level of interpersonal/marital difficulties reported by veterans with PTSD and their family members. In doing so, we present a compelling rationale for the inclusion of formal skills training in emotional regulation in couple-/family-based PTSD treatments. We further argue that increased exposure to trauma-related memories and emotions in treatments based on learning theory requires veterans and their partners to learn to manage the uncomfortable emotions that they previously avoided. Conjoint treatments that were developed in the last 30 years all acknowledge the importance of emotions in PTSD but vary widely in their relative emphasis on helping participants to acquire strategies to modulate them compared to other therapeutic tasks such as learning about the disorder or disclosing the trauma to a loved one. We conclude our review by describing two recent innovative treatments for PTSD that incorporate a special emphasis on emotion-regulation skills training in the dyadic context: structured approach therapy (SAT) and multi-family group for military couples (MFG-MC). Although the incorporation of emotion-regulation skills into conjoint PTSD therapies appears promising, replication and comparison to cognitive-behavioral approaches is needed to refine our understanding of which symptoms and veterans might be more responsive to one approach versus others.

Perspectives of veterans with mild traumatic brain injury on community reintegration: Making sense of unplanned separation from service.

For veterans separated from the military as a result of acquired mild traumatic brain injury (mTBI), the transition from a military identity to a civilian one is complicated by health, cognitive, and psychosocial factors. We conducted in-depth interviews with 8 veterans with mTBI to understand how they perceived the experience of departure from the military, rehabilitation services provided at a Department of Veterans Affairs (VA) Polytrauma Network Site, and reentry into civilian life. Two distinct patterns of thinking about community reintegration emerged. The first pattern was characterized by the perception of a need to fade one's military identity. The second pattern, conversely, advanced the perception of a need to maintain the integrity of one's military identity though living in a civilian world. These perceptions may be linked to individuals' roles while in the military and whether violent acts were committed in carrying out the mission of service, acts not consonant with positive self-appraisal in the civilian world. The crisis of unplanned, involuntary separation from the military was universally perceived as a crisis equal to that of the precipitating injury itself. The perception that civilians lacked understanding of veterans' military past and their current transition set up expectations for interactions with health care providers, as well as greatly impacting relationships with friend and family. Our veterans' shared perceptions support existing mandates for greater dissemination of military culture training to health care providers serving veterans both at VA and military facilities as well as in the civilian community at large. (PsycINFO Database Record

Exploration of the Personal Health Record as a Tool for Spinal Cord Injury Health Self-Management and Coordination of Care.

Background: A personal health record (PHR) is a collection of electronic health data drawn from multiple sources but managed by the patient. The PHR is a strategy that enables patients to be proactive in the coordination of their care. Objective: The purpose of this clinical improvement study was to discover what worked, what did not work, and what could be improved in the initial implementation of MyPHR, a PHR tailored to patients with spinal cord injury (SCI), to make it a useful tool for care coordination and health self-management. Methods: Five individuals with chronic (>1 year) SCI carried out trial use of MyPHR. Twelve hours of interactions, including screen navigation and think-aloud reflection, were recorded and analyzed using formative research, a qualitative method and type of case study research. Results: Two key themes emerged to guide the implementation of PHR technology: selectivity in the identification of information for the patient to track, and continual support and communication with the clinical team. Conclusion: Given the volume of electronic data available to patients with SCI, the data identified to import, manage, and keep current in a PHR have to be thoughtfully selected to make sure the patient is convinced of the worth of this data record and is willing to invest the time and effort it will take to maintain it. A PHR should be implemented with a deliberate focus on its function as a tool that patients and providers use together to expand communication as they work toward their common goal of optimizing health after SCI.

Executive functioning in TBI from rehabilitation to social reintegration: COMPASS (goal,) a randomized controlled trial (grant: 1I01RX000637-01A3 by the VA ORD RR&D, 2013-2016).

BACKGROUND: Traumatic brain injury is a major health problem that frequently leads to deficits in executive function. Self-regulation processes, such as goal-setting, may become disordered after traumatic brain injury, particularly when the frontal regions of the brain and their connections are involved. Such impairments reduce injured veterans' ability to return to work or school and to regain satisfactory personal lives. Understanding the neurologically disabling effects of brain injury on executive function is necessary for both the accurate diagnosis of impairment and the individual tailoring of rehabilitation processes to help returning service members recover independent function. METHODS/DESIGN: The COMPASS(goal) (Community Participation through Self-Efficacy Skills Development) program develops and tests a novel patient-centered intervention framework for community re-integration psychosocial research in veterans with mild traumatic brain injury. COMPASS(goal) integrates the principles and best practices of goal self-management. Goal setting is a core skill in self-management training by which persons with chronic health conditions learn to improve their status and decrease symptom effects. Over a three-year period, COMPASS(goal) will recruit 110 participants with residual executive dysfunction three months or more post-injury. Inclusion criteria combine both clinical diagnosis and standardized scores that are >1 SD from the normative score on the Frontal Systems Rating Scale. Participants are randomized into two groups: goal-management (intervention) and supported discharge (control). The intervention is administered in eight consecutive, weekly sessions. Assessments occur at enrollment, post-intervention/supported discharge, and three months post-treatment follow-up. DISCUSSION: Goal management is part of the "natural language" of rehabilitation. However, collaborative goal-setting between clinicians/case managers and clients can be hindered by the cognitive deficits that follow brain injury. Re-training returning veterans with brain injury in goal management, with appropriate help and support, would essentially treat deficits in executive function. A structured approach to goal self-management may foster greater independence and self-efficacy, help veterans gain insight into goals that are realistic for them at a given time, and help clinicians and veterans to work more effectively as true collaborators.