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1.
Phys Occup Ther Pediatr ; : 1-19, 2024 Feb 28.
Article in English | MEDLINE | ID: mdl-38419343

ABSTRACT

AIMS: Assess the potential benefits of using PedBotLab, a clinic based robotic ankle platform with integrated video game software, to improve ankle active and passive range of motion, strength, selective motor control, gait efficiency, and balance. METHODS: Ten participants with static neurological injuries and independent ambulation participated in a 10-week pilot study (Pro00013680) to assess feasibility and efficacy of PedBotLab as a therapeutic device twice weekly. Isometric ankle strength, passive and active ankle range of motion, plantarflexor spasticity, selective motor control of the lower extremity, balance, and gait speed were measured pre- and post-trial. RESULTS: Statistically significant improvements were seen in flexibility, active range of motion, and strength in multiple planes of ankle motion. Ankle dorsiflexion with knee flexion and knee extension demonstrated statistically significant results in all outcome measures. No significant changes were observed in gait speed outcomes. CONCLUSIONS: The use of PedbotLab can lead to improvements in ankle strength, flexibility, and active range of motion for children with static neurological injuries. Future studies aim to evaluate the effect on gait quality and work toward developing a home-based device.

2.
Healthcare (Basel) ; 11(6)2023 Mar 07.
Article in English | MEDLINE | ID: mdl-36981440

ABSTRACT

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.

3.
Front Psychol ; 13: 1030741, 2022.
Article in English | MEDLINE | ID: mdl-36532998

ABSTRACT

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.

4.
Sensors (Basel) ; 22(19)2022 Sep 29.
Article in English | MEDLINE | ID: mdl-36236525

ABSTRACT

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.


Subject(s)
Cerebral Palsy , Movement Disorders , Cerebral Palsy/diagnosis , Child , Humans , Infant , Motion , Movement , Movement Disorders/diagnosis , Neural Networks, Computer
5.
Arch Rehabil Res Clin Transl ; 4(3): 100203, 2022 Sep.
Article in English | MEDLINE | ID: mdl-36123986

ABSTRACT

Objective: To assess the feasibility of a hand use and grasp sensor system in collecting and quantifying fine motor development longitudinally in an infant's home environment. Design: Cohort study. Researchers made home visits monthly to participating families to collect grasp data from infants using a hand use and grasp sensor. Setting: Data collection were conducted in each participant's home. Participants: A convenience sample of 14 typical developmental infants were enrolled from 3 months to 9 months of age. Two infants dropped out. A total of 62 testing sessions involving 12 infants were available for analysis (N=12). Interventions: At each session, the infant was seated in a standardized infant seat. Each instrumented toy was hung on the hand use and grasp sensor structure, presented for 6 minutes in 3 feedback modes: visual, auditory, and vibratory. Main Outcome Measures: Infant grasp frequency and duration, peak grasping force, average grasping force, force coefficient of variation, and proportion of bimanual grasps. Results: A total of 2832 recorded grasp events from 12 infants were analyzed. In linear mixed-effects model analysis, when interacting with each toy, infants' peak grasp force, average grasp force, and accumulated grasp time all increased significantly with age (all P<.001). Bimanual grasps also occupied an increasingly greater percentage of infants' total grasps as they grew older (bar toy P<.001, candy toy P=.021). Conclusions: We observed significant changes in hand use and grasp sensor outcome measures with age that are consistent with maturation of grasp skills. We envision the evolution of hand use and grasp sensor technology into an inexpensive and convenient tool to track infant grasp development for early detection of possible developmental delay and/or cerebral palsy as a supplement to clinical evaluations.

6.
Pediatr Phys Ther ; 34(2): 212-219, 2022 04 01.
Article in English | MEDLINE | ID: mdl-35385456

ABSTRACT

PURPOSE: This pilot study assesses the feasibility of using PedBotHome to promote adherence to a home exercise program, the ability of the device to withstand frequent use, and changes in participant ankle mobility.PedBotHome is a robotic ankle device with integrated video game software designed to improve ankle mobility in children with cerebral palsy. METHODS: Eight participants enrolled in a 28-day trial of PedBotHome. Ankle strength, range of motion, and plantar flexor spasticity were measured pre- and posttrial. Performance was monitored remotely, and game settings were modified weekly by physical therapists. RESULTS: Four participants met the study goal of 20 days of use. There were statistically significant improvements in ankle strength, spasticity, and range of motion. CONCLUSIONS: PedBotHome is a feasible device to engage children with static neurological injuries in ankle home exercise. This pilot study expands the paradigm for future innovative home-based robotic rehabilitation.


Subject(s)
Robotic Surgical Procedures , Video Games , Ankle , Ankle Joint , Child , Exercise Therapy , Humans , Muscle Spasticity , Pilot Projects
7.
PM R ; 13(3): 229-240, 2021 03.
Article in English | MEDLINE | ID: mdl-32860333

ABSTRACT

OBJECTIVE: To describe the scoring approach, considering interpretability, validity, and use, of a new patient-centered patient reported outcome (PRO), the Urinary Symptom Questionnaire for Neurogenic Bladder-Intermittent Catheter version (USQNB-IC). DESIGN: Subject matter experts (researchers, clinicians, a consumer, a psychometrician) classified USQNB-IC items. Profiles were then composed based on self-management decisions made by patients; patient management decisions made by clinicians; and research-oriented decisions made by investigators. Participants in an 18-month pilot study completed the USQNB-IC every week. Differences in decisions based on traditional 'total scores' and profiles were examined. Validity was defined based on alignment of scoring method with decisions. SETTING: A new set of patient-centered PROs enable monitoring and decision-making around urinary signs and symptoms among people with neurogenic bladder (NB). PARTICIPANTS: Classifications of USQNB-IC items by subject matter experts. Utility of the classifications and profiles that were created was assessed using weekly responses from the 6-month baseline period from 103 participants in a pilot study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Classification of the 29 symptoms resulted in four categories with exchangeability within-category and nonexchangeability across categories. The burden of each symptom type is one approach to scoring the USQNB-IC. Five profiles, based on these categories, emerged based on, and supportive of, decisions to be made according to symptoms, representing a categorical approach to scoring the USQNB-IC. RESULTS: USQNB-IC items are not all exchangeable. Four symptom classifications comprise within-class exchangeable items. Five profiles emerged to summarize these items to promote decision-making and identification of change over time. Both ways to "score" the USQNB-IC are described and discussed. CONCLUSIONS: "Profiling" promotes valid and interpretable decisions by patients and clinicians, based on a patient's urinary symptoms with the USQNB-IC cross-sectionally and longitudinally. Alternatively, four subsets of the 29 USQNB-IC symptoms can be used as continuous outcomes representing "burden" in clinical management or research.


Subject(s)
Urinary Bladder, Neurogenic , Catheters , Humans , Pilot Projects , Surveys and Questionnaires , Urinary Bladder, Neurogenic/diagnosis , Urinary Bladder, Neurogenic/etiology , Urinary Bladder, Neurogenic/therapy , Urinary Catheterization
8.
PM R ; 13(7): 695-706, 2021 07.
Article in English | MEDLINE | ID: mdl-32798286

ABSTRACT

OBJECTIVE: To test the effectiveness of intravesical Lactobacillus rhamnosus GG (LGG) to reduce the burden of urinary symptoms for individuals with spinal cord injury and disease (SCI/D) with neurogenic lower urinary tract dysfunction (NLUTD) who manage their bladders with intermittent catheterization (IC). DESIGN: A three-phase study (6 months each in baseline, intervention, and washout). Participants self-managed following the Self-Management Protocol using Probiotics (SMP-Pro), completing the online Urinary Symptom Questionnaire for Neurogenic Bladder-IC version (USQNB-IC) weekly. SETTING: Nationwide (United States). PARTICIPANTS: Ninety-six adults and seven children with SCI/D. INTERVENTIONS: In response to one or both of the SMP-Pro trigger urinary symptoms, "cloudier" or "foul smelling" urine, participants self-administered using a clean urinary catheter an LGG+ Normal Saline instillate once or twice in a 30-hour period. MAIN OUTCOME MEASURES: Change in USQNB-IC burden was adjusted individually according to the previous phase for four symptom types. Adjusted changes in burden between the intervention and washout phases were analyzed using one-sample t-tests. Holm correction was applied for the four types of symptoms: A, clinically actionable; B1, bladder function; B2, urine quality; and C, other. RESULTS: During the intervention phase, participants met SMP-Pro instillation criteria 3.83 times on average (range 1-20). An average of 5.6 doses of LGG were instilled. For those who instilled at least once, burdens of type A and B2 symptoms were significantly improved at washout (both adjusted P < .05). CONCLUSIONS: Self-instilled LGG seemed to improve "clinically actionable" (A) and "urine quality" (B2) symptom burden. No changes were observed for those who did not instill. This first-in-human clinical trial supports ongoing research of intravesical LGG, and the SMP-Pro for urinary symptoms.


Subject(s)
Lacticaseibacillus rhamnosus , Spinal Cord Injuries , Urinary Bladder, Neurogenic , Adult , Child , Humans , Spinal Cord Injuries/complications , Surveys and Questionnaires , Urinary Bladder, Neurogenic/etiology , Urinary Bladder, Neurogenic/therapy
9.
Technol Disabil ; 32(4): 285-294, 2020.
Article in English | MEDLINE | ID: mdl-34421288

ABSTRACT

BACKGROUND: Dynamic exoskeleton orthoses provide assistance needed to complete movements that would otherwise be impossible after stroke. Beyond the demonstration of their effectiveness, the subjective experience of dynamic orthoses also needs to be considered. OBJECTIVE: To support functional recovery after stroke through the development of Hand-TaPS (Task Practice after Stroke), an instrument to evaluate dynamic hand orthoses in home therapy. METHODS: Dynamic hand orthosis subject matter experts (N = 14), professionals and consumers, considered the items of PYTHEIA, a valid and reliable instrument merging well-tested, assistive technology (AT) assessment items with those tuned to the greater complexity of emerging technologies. Experts reflected on how each item aligned with their personal experience of dynamic orthosis use. Interpretative Phenomenological Analysis guided identification of themes. RESULTS: Four themes (5/20 items) appraised highly relevant for Hand-TaPS. The remaining eight themes (15/20 items) were deemed in need of modification. CONCLUSIONS: Dynamic hand orthoses constitute a special case of AT; the assistance they provide targets therapy, not ADLs. Our work to develop Hand-TaPS provides a clear example of the theoretical difference between rehabilitative and assistive technology and underscores the importance of consideration of how a device is used in its assessment.

10.
Informatics (MDPI) ; 7(4): 45-50, 2020.
Article in English | MEDLINE | ID: mdl-34522643

ABSTRACT

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.

11.
IEEE Int Conf Rehabil Robot ; 2019: 13-20, 2019 06.
Article in English | MEDLINE | ID: mdl-31374600

ABSTRACT

Our research team has developed two versions of an ankle robot for children with cerebral palsy. Both devices provide three degrees of freedom and are connected to an airplane video game. The child uses his/her foot as the controller for the plane and attempts to fly through a series of hoops arranged to manipulate the foot across the ankle joint. The first device is for lab-based therapy and four children have completed 20 sessions each with the device. The second device is for home-based therapy and two children have completed a 28-day trial using the device at home. Both studies were done under Institutional Review Board approval and all participants improved ankle range of motion. Further studies are ongoing to gather more data and validate the results.


Subject(s)
Ankle/physiology , Cerebral Palsy/rehabilitation , Physical Therapy Modalities/instrumentation , Robotics/methods , Adolescent , Child , Child, Preschool , Female , Foot Orthoses , Home Care Services , Humans , Male , Range of Motion, Articular , User-Computer Interface
12.
PLoS One ; 13(7): e0197568, 2018.
Article in English | MEDLINE | ID: mdl-29990375

ABSTRACT

BACKGROUND: We developed a Urinary Symptom Questionnaire for individuals with neurogenic bladder due to spinal cord injury (SCI) and spina bifida (SB) who manage their bladders with intermittent catheterization, the USQNB-IC. This project followed an approach to patient-centered patient reported outcomes development that we created and published in 2017, specifically to ensure the primacy of the patient's perspective and experience. PARTICIPANTS: Two sets of responses were collected from individuals with neurogenic bladder due to either SCI (n = 336) and SB (patients, n = 179; and caregivers of patients with NB, n = 66), and three sets of "controls", individuals with neurogenic bladder who do not have a history of UTIs (n = 49) individuals with chronic mobility impairments (neither SCI nor SB) and without neurogenic bladder (n = 46), and those with no mobility impairment, no neurogenic bladder, and no history of UTIs (n = 64). METHOD: Data were collected from all respondents to estimate these psychometric or measurement domains characterizing a health related PRO: Reliability (minimization of measurement error; internal consistency or interrelatedness of the items; and maximization of variability that is due to "true" difference between levels of the symptoms across patients), and validity (content, reflection of the construct to be measured; face, recognizability of the contents as representing the construct to be measured; structural, the extent to which the instrument captures recognizable dimensions of the construct to be measured; and criterion, association with a gold standard). RESULTS: Evidence from these five groups of respondents suggest the instrument has face, content, criterion, convergent, and divergent validity, as well as reliability. The items were all more descriptive of our patient (focus) groups and were only weakly endorsed by the control groups. CONCLUSIONS: The instrument is unique in its emphasis on, and origination from, the lived experiences of patients with neurogenic bladder who use intermittent catheterization; this preliminary psychometric evidence suggests the instrument could be useful for research and in the clinic. These results justify further development of the instrument, including formal exploration of the scoring and estimation of responsivity of these items to clinical interventions as well as patient-directed self care.


Subject(s)
Catheterization/psychology , Patient Reported Outcome Measures , Self Care/psychology , Urinary Bladder, Neurogenic/therapy , Urinary Tract Infections/therapy , Adult , Aged , Caregivers/psychology , Female , Humans , Male , Middle Aged , Psychometrics , Spinal Cord Injuries/pathology , Spinal Cord Injuries/physiopathology , Spinal Dysraphism/pathology , Spinal Dysraphism/physiopathology , Urinary Bladder, Neurogenic/physiopathology , Urinary Tract Infections/physiopathology
13.
Mil Med Res ; 4: 21, 2017.
Article in English | MEDLINE | ID: mdl-28680693

ABSTRACT

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.


Subject(s)
Emotion-Focused Therapy/standards , Family/psychology , Stress Disorders, Post-Traumatic/psychology , Stress Disorders, Post-Traumatic/therapy , Veterans/psychology , Emotion-Focused Therapy/history , Emotion-Focused Therapy/methods , History, 20th Century , History, 21st Century , Humans , War Exposure/adverse effects
14.
PLoS One ; 12(3): e0171114, 2017.
Article in English | MEDLINE | ID: mdl-28257414

ABSTRACT

The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were followed. The typical process of developing PROs begins with an initial list of signs or symptoms originating from clinicians or PRO developers; patient validation of this list ensures that the list (i.e., the new PRO) is interpretable by patients, but not that patient perspectives are central or even represented. The new model begins with elicitation from clinicians and patients independently and separately. These perspectives are formally analyzed qualitatively, and the results are iteratively integrated by researchers, supporting clinical relevance and patient centeredness. We describe the application of this new model to the development of a PRO for urinary signs and symptoms in individuals with neuropathic bladder, and test the hypothesis that the two processes generate qualitatively different instruments using a national validation sample of 300 respondents. Of its 29 items, the new instrument included 13 signs/symptoms derived from existing clinical practice guidelines, with 16 others derived from the patient/focus groups. The three most-endorsed items came from the patients, and the three least-endorsed items came from clinical guidelines. Thematic qualitative analysis of the elicitation process, as well as the results from our national sample, support the conclusion that the new model yields an instrument that is clinically interpretable, but more patient-centered, than the typical model would have done in this context.


Subject(s)
Outcome Assessment, Health Care/statistics & numerical data , Patient Reported Outcome Measures , Patients/statistics & numerical data , Focus Groups , Guidelines as Topic , Humans , Surveys and Questionnaires
15.
Am J Orthopsychiatry ; 87(2): 129-138, 2017.
Article in English | MEDLINE | ID: mdl-28206800

ABSTRACT

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


Subject(s)
Adaptation, Psychological , Brain Injuries, Traumatic/psychology , Community Integration/psychology , Military Personnel/psychology , Veterans/psychology , Adult , Family/psychology , Female , Hospitals, Veterans , Humans , Interviews as Topic , Male , Middle Aged , United States
16.
Top Spinal Cord Inj Rehabil ; 23(3): 218-225, 2017.
Article in English | MEDLINE | ID: mdl-29339897

ABSTRACT

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.


Subject(s)
Electronic Health Records , Health Records, Personal , Patient Care Team , Patient Participation , Self-Management , Spinal Cord Injuries/therapy , Adult , Female , Humans , Male , Middle Aged
17.
Mil Med Res ; 2: 32, 2015.
Article in English | MEDLINE | ID: mdl-26664736

ABSTRACT

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.

18.
PM R ; 7(6): 613-36, 2015 Jun.
Article in English | MEDLINE | ID: mdl-25529614

ABSTRACT

OBJECTIVES: To evaluate the literature on the effectiveness of bed and wheelchair positioning and repositioning in the prevention of pressure ulcers (PUs) in both the spinal cord injury (SCI) and non-SCI populations. DESIGN: Systematic review. METHODS: PubMed, CINAHL, PsycINFO, and EMBASE were queried with the subject heading terms "pressure sore," "pressure ulcer," "position or turn in bed, wheelchair," "pressure relief," and "pressure release." All study design types that assessed the effectiveness of bed and wheelchair positioning and pressure relief maneuvers in any patient group and in any setting were sought. Three independent reviewers extracted and summarized details of eligible trials using a standardized method. Two independent reviewers assessed the methodological quality of each trial using the American Academy of Neurology guidelines. When reviewers were not able to reach consensus, a third independent reviewer served as tiebreaker. RESULTS: We identified 2820 publications, of which 49 met inclusion criteria. Of these publications, the subject population was 2834 (923 persons with SCI, 717 persons without SCI, and 1194 healthy control subjects). Among studies examining pressure related to position or repositioning in bed or sitting, procedures for measuring skin pressure and metabolism were highly variable by anatomic location, measurement technique, outcome measure, study site, participant characteristics, and description of position/turning for bed and seated interventions. Numerous factors can influence tissue interface pressures, and no prospective studies had been performed to determine a causal relationship between interface pressure and skin breakdown. Several studies suggest that skin response to pressure differs between subjects with and without SCI. Conflicting results and insufficient evidence for optimal bed and seated positioning and turning and pressure relief maneuvers to prevent PUs in both SCI and non-SCI populations were limiting factors. CONCLUSIONS: Although there is no clear optimal positioning or turning frequency in bed, the evidence suggests avoiding the 90° lateral position because of high pressures and PU risk over the trochanters. During sitting, pressures are linearly redistributed from the sitting area during recline and tilt; however, reclining carries with it an increased risk of shear forces on this skin. The evidence does not support conclusive guidelines on positioning or repositioning techniques for PU prevention in bed or during sitting. We conclude that PU risk is highly individualized, with the SCI population at a higher risk, which demands flexible PU prevention strategies for bed/seated positioning and pressure relief maneuvers. Education has and will remain our most powerful ally to thwart this pervasive public health problem.


Subject(s)
Pressure Ulcer/prevention & control , Spinal Cord Injuries/complications , Humans , Pressure Ulcer/etiology , Spinal Cord Injuries/rehabilitation
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