Manon Schladen - Academia.edu (original) (raw)
Papers by Manon Schladen
Handbook of Psychosocial Interventions for Veterans and Service Members, 2016
The Qualitative Report, 2020
The desire to maintain an independent lifestyle is one shared by an increasing number of older ad... more The desire to maintain an independent lifestyle is one shared by an increasing number of older adults. Adult children, spouses, siblings, and other relatives, also known as family caregivers, play an integral role in helping their loved ones maintain independence. Remote monitoring technologies (RMTs) such as wearable sensors, mobile emergency devices, smartphone apps, and webcams can be used to monitor, sense, record, and communicate a person’s daily activities. However, understanding is limited of the family caregiver’s needs and perceptions of RMTs used in a home-based setting. The purpose was to explore how family caregivers perceive RMTs and their use for monitoring and supporting their care recipients who choose to live independently. We used a survey to capture some basic characteristics of family caregivers, what they know about RMTs, and to recruit interview participants. We conducted semi-structured interviews with four participants who shared the commonality of caring for...
Chronic conditions carry with them strong emotions and often lead to charged relationships betwee... more Chronic conditions carry with them strong emotions and often lead to charged relationships between patients and their health providers and, by extension, patients and health researchers. Persons are both autonomous and relational and a purely cognitive model of autonomy neglects the social and relational basis of chronic illness. Ensuring genuine informed consent in research requires a thorough understanding of how participants perceive a study and their reasons for participation. Surveys may not capture the complexities of reasoning that underlies study participation. Contradictory reasons for participation, for instance an initial claim of altruism as rationale and a subsequent claim of personal benefit (therapeutic misconception), affect the quality of informed consent. Individuals apply principles through the filter of personal values and lived experience. Authentic autonomy, and hence authentic consent to research, occurs within the context of patients- unique life narratives a...
Advances in Human Factors and Ergonomics in Healthcare and Medical Devices, 2021
The Qualitative Report, 2018
For reproductive-age women living with HIV, birth spacing allows for optimization of maternal hea... more For reproductive-age women living with HIV, birth spacing allows for optimization of maternal health and viral suppression to prevent mother-to-child transmission of HIV. We conducted semi-structured informational interviews to explore use of contraception for birth spacing. Interviews were transcribed and analyzed. Audio files were reviewed to capture non-explicit data. We interviewed 18 multiparous HIV positive women. All described experiences with at least one contraceptive method. Six themes emerged: Burden of contraception, Failure of birth control, Impact of youth and lack of life experience, Community beliefs about birth control, Lack of partner cooperation, and Altruism. Women viewed birth spacing favorably. Young age at first delivery, contraceptive side effects, non-adherence to short-acting methods, lack of partner cooperation, and prior contraceptive failure were identified as barriers to ideal birth spacing. Additional outreach is needed in women living with HIV to over...
The Qualitative Report, 2021
A narrow interpretation of “medical necessity” can result in poorer health as well as a more rest... more A narrow interpretation of “medical necessity” can result in poorer health as well as a more restricted life for people with disabilities. We examined the impact of US policy on reimbursement of intermittent catheters (ICs) on the lives of people with neurogenic bladder (NB) who require catheters to urinate. We conducted in-depth, longitudinal interviews with nine stakeholders. Actor-Network Theory was used to describe interactions among human agents, IC products, and policies in the reimbursement arena. Restrictions on the type and quantities of ICs reimbursed emerged as the most potent inhibitor to health and wellbeing among consumers with NB. IC suppliers, due to the large number of other stakeholders with whom they interact in the reimbursement process, emerged as strong enablers of preferred IC use among people with NB. Lack of an impartial central clearinghouse on IC products and coverage impeded consumers’ ability to make informed decisions.
2019 IEEE 16th International Conference on Rehabilitation Robotics (ICORR), 2019
Our research team has developed two versions of an ankle robot for children with cerebral palsy. ... more 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.
Technological advances in game-mediated robotics provide an opportunity to engage children with C... more Technological advances in game-mediated robotics provide an opportunity to engage children with 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 and of such assistive/rehabilitative gamebots by their target populations and their families. 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 A/R gamebot for 28 days in their homes to understand how existing theories and instruments were either appropriate or inappropriate to measuring the subjective experience of A/R gamebots. Key findings were the importance of differentiating the paradigm of rehabilitative from th...
Archives of Physical Medicine and Rehabilitation, 2020
Archives of Physical Medicine and Rehabilitation, 2020
Complex industrial systems are continuously monitored by a large number of heterogeneous sensors.... more Complex industrial systems are continuously monitored by a large number of heterogeneous sensors. The diversity of their operating conditions and the possible fault types make it impossible to collect enough data for learning all the possible fault patterns. The paper proposes an integrated automatic unsupervised feature learning and one-class classification for fault detection that uses data on healthy conditions only for its training. The approach is based on stacked Extreme Learning Machines (namely Hierarchical, or HELM) and comprises an autoencoder, performing unsupervised feature learning, stacked with a one-class classifier monitoring the distance of the test data to the training healthy class, thereby assessing the health of the system. This study provides a comprehensive evaluation of HELM fault detection capability compared to other machine learning approaches, such as stand-alone one-class classifiers (ELM and SVM), these same one-class classifiers combined with traditional dimensionality reduction methods (PCA) and a Deep Belief Network. The performance is first evaluated on a synthetic dataset that encompasses typical characteristics of condition monitoring data. Subsequently, the approach is evaluated on a real case study of a power plant fault. The proposed algorithm for fault detection, combining feature learning with the one-class classifier, demonstrates a better performance, particularly in cases where condition monitoring data contain several non-informative signals.
Archives of Physical Medicine and Rehabilitation, 2019
Archives of Physical Medicine and Rehabilitation, 2019
PloS one, 2018
We developed a Urinary Symptom Questionnaire for individuals with neurogenic bladder due to spina... more 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. 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). Data were collected from all respondents to estimate these psychomet...
Topics in Spinal Cord Injury Rehabilitation, 2017
Background: A personal health record (PHR) is a collection of electronic health data drawn from m... more 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.
Military Medical Research, 2017
Post-traumatic stress disorder (PTSD) is a disabling, potentially chronic disorder that is charac... more 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 tha...
PloS one, 2017
The objectives of this study were to describe and demonstrate a new model of developing patient r... more 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...
American Journal of Orthopsychiatry, 2017
Many military members struggle with the reintegration into civilian life, especially when this tr... more Many military members struggle with the reintegration into civilian life, especially when this transition was unplanned due to mild traumatic brain injury. This study interviewed eight Veterans with mild traumatic brain injuries to better understand their experiences of leaving the military and reentering civilian life. Some participants reported the need to distance themselves from their military identity while others felt they needed to maintain their military identity throughout civilian life. All participants perceived reintegration as a crisis equal to that of their injury.
Military Medical Research, 2015
Background: Traumatic brain injury is a major health problem that frequently leads to deficits in... more 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 reintegration 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.
Handbook of Psychosocial Interventions for Veterans and Service Members, 2016
The Qualitative Report, 2020
The desire to maintain an independent lifestyle is one shared by an increasing number of older ad... more The desire to maintain an independent lifestyle is one shared by an increasing number of older adults. Adult children, spouses, siblings, and other relatives, also known as family caregivers, play an integral role in helping their loved ones maintain independence. Remote monitoring technologies (RMTs) such as wearable sensors, mobile emergency devices, smartphone apps, and webcams can be used to monitor, sense, record, and communicate a person’s daily activities. However, understanding is limited of the family caregiver’s needs and perceptions of RMTs used in a home-based setting. The purpose was to explore how family caregivers perceive RMTs and their use for monitoring and supporting their care recipients who choose to live independently. We used a survey to capture some basic characteristics of family caregivers, what they know about RMTs, and to recruit interview participants. We conducted semi-structured interviews with four participants who shared the commonality of caring for...
Chronic conditions carry with them strong emotions and often lead to charged relationships betwee... more Chronic conditions carry with them strong emotions and often lead to charged relationships between patients and their health providers and, by extension, patients and health researchers. Persons are both autonomous and relational and a purely cognitive model of autonomy neglects the social and relational basis of chronic illness. Ensuring genuine informed consent in research requires a thorough understanding of how participants perceive a study and their reasons for participation. Surveys may not capture the complexities of reasoning that underlies study participation. Contradictory reasons for participation, for instance an initial claim of altruism as rationale and a subsequent claim of personal benefit (therapeutic misconception), affect the quality of informed consent. Individuals apply principles through the filter of personal values and lived experience. Authentic autonomy, and hence authentic consent to research, occurs within the context of patients- unique life narratives a...
Advances in Human Factors and Ergonomics in Healthcare and Medical Devices, 2021
The Qualitative Report, 2018
For reproductive-age women living with HIV, birth spacing allows for optimization of maternal hea... more For reproductive-age women living with HIV, birth spacing allows for optimization of maternal health and viral suppression to prevent mother-to-child transmission of HIV. We conducted semi-structured informational interviews to explore use of contraception for birth spacing. Interviews were transcribed and analyzed. Audio files were reviewed to capture non-explicit data. We interviewed 18 multiparous HIV positive women. All described experiences with at least one contraceptive method. Six themes emerged: Burden of contraception, Failure of birth control, Impact of youth and lack of life experience, Community beliefs about birth control, Lack of partner cooperation, and Altruism. Women viewed birth spacing favorably. Young age at first delivery, contraceptive side effects, non-adherence to short-acting methods, lack of partner cooperation, and prior contraceptive failure were identified as barriers to ideal birth spacing. Additional outreach is needed in women living with HIV to over...
The Qualitative Report, 2021
A narrow interpretation of “medical necessity” can result in poorer health as well as a more rest... more A narrow interpretation of “medical necessity” can result in poorer health as well as a more restricted life for people with disabilities. We examined the impact of US policy on reimbursement of intermittent catheters (ICs) on the lives of people with neurogenic bladder (NB) who require catheters to urinate. We conducted in-depth, longitudinal interviews with nine stakeholders. Actor-Network Theory was used to describe interactions among human agents, IC products, and policies in the reimbursement arena. Restrictions on the type and quantities of ICs reimbursed emerged as the most potent inhibitor to health and wellbeing among consumers with NB. IC suppliers, due to the large number of other stakeholders with whom they interact in the reimbursement process, emerged as strong enablers of preferred IC use among people with NB. Lack of an impartial central clearinghouse on IC products and coverage impeded consumers’ ability to make informed decisions.
2019 IEEE 16th International Conference on Rehabilitation Robotics (ICORR), 2019
Our research team has developed two versions of an ankle robot for children with cerebral palsy. ... more 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.
Technological advances in game-mediated robotics provide an opportunity to engage children with C... more Technological advances in game-mediated robotics provide an opportunity to engage children with 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 and of such assistive/rehabilitative gamebots by their target populations and their families. 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 A/R gamebot for 28 days in their homes to understand how existing theories and instruments were either appropriate or inappropriate to measuring the subjective experience of A/R gamebots. Key findings were the importance of differentiating the paradigm of rehabilitative from th...
Archives of Physical Medicine and Rehabilitation, 2020
Archives of Physical Medicine and Rehabilitation, 2020
Complex industrial systems are continuously monitored by a large number of heterogeneous sensors.... more Complex industrial systems are continuously monitored by a large number of heterogeneous sensors. The diversity of their operating conditions and the possible fault types make it impossible to collect enough data for learning all the possible fault patterns. The paper proposes an integrated automatic unsupervised feature learning and one-class classification for fault detection that uses data on healthy conditions only for its training. The approach is based on stacked Extreme Learning Machines (namely Hierarchical, or HELM) and comprises an autoencoder, performing unsupervised feature learning, stacked with a one-class classifier monitoring the distance of the test data to the training healthy class, thereby assessing the health of the system. This study provides a comprehensive evaluation of HELM fault detection capability compared to other machine learning approaches, such as stand-alone one-class classifiers (ELM and SVM), these same one-class classifiers combined with traditional dimensionality reduction methods (PCA) and a Deep Belief Network. The performance is first evaluated on a synthetic dataset that encompasses typical characteristics of condition monitoring data. Subsequently, the approach is evaluated on a real case study of a power plant fault. The proposed algorithm for fault detection, combining feature learning with the one-class classifier, demonstrates a better performance, particularly in cases where condition monitoring data contain several non-informative signals.
Archives of Physical Medicine and Rehabilitation, 2019
Archives of Physical Medicine and Rehabilitation, 2019
PloS one, 2018
We developed a Urinary Symptom Questionnaire for individuals with neurogenic bladder due to spina... more 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. 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). Data were collected from all respondents to estimate these psychomet...
Topics in Spinal Cord Injury Rehabilitation, 2017
Background: A personal health record (PHR) is a collection of electronic health data drawn from m... more 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.
Military Medical Research, 2017
Post-traumatic stress disorder (PTSD) is a disabling, potentially chronic disorder that is charac... more 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 tha...
PloS one, 2017
The objectives of this study were to describe and demonstrate a new model of developing patient r... more 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...
American Journal of Orthopsychiatry, 2017
Many military members struggle with the reintegration into civilian life, especially when this tr... more Many military members struggle with the reintegration into civilian life, especially when this transition was unplanned due to mild traumatic brain injury. This study interviewed eight Veterans with mild traumatic brain injuries to better understand their experiences of leaving the military and reentering civilian life. Some participants reported the need to distance themselves from their military identity while others felt they needed to maintain their military identity throughout civilian life. All participants perceived reintegration as a crisis equal to that of their injury.
Military Medical Research, 2015
Background: Traumatic brain injury is a major health problem that frequently leads to deficits in... more 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 reintegration 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.