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AIM: To describe caregiver experiences, perceptions, and device preferences between a modified ride-on car (MROC) and an Explorer Mini, including perceived changes in participation, barriers, and benefits for young children with cerebral palsy (CP) classified in Gross Motor Function Classification System (GMFCS) level V. METHOD: A subset of data were analyzed from a larger multisite study. Semi-structured interviews were conducted with 10 caregivers of children with CP in GMFCS level V across a 16-week trial with two mobility devices. Each interview was audio-recorded, transcribed verbatim, and analysed using constant comparison methods. RESULTS: Seven of 10 caregivers preferred the Explorer Mini over the MROC. Four themes emerged. One related to the perceived benefits and barriers of each device (ease and convenience is essential) and three related to perceived changes in participation: (1) autonomy enacted through mobility; (2) belonging and being present; and (3) participation recognized as an area of growth. INTERPRETATION: Despite limited consideration of powered mobility for this population, caregivers of children in GMFCS level V reported similar benefits and barriers compared to children in other GMFCS levels shown in the literature. Particularly, caregivers perceived positive changes in their child's participation and recognized the ability for continued improvements in participation when using powered mobility. WHAT THIS PAPER ADDS: Children with cerebral palsy classified in Gross Motor Function Classification System level V are often excluded from powered mobility use and research. Despite this, caregivers reported positive experiences for their children. Caregivers felt that participation in powered mobility led to increased autonomy and overall sense of inclusion and belonging for their children. Most caregivers preferred the Explorer Mini over the modified ride-on car but recognized that both devices had benefits and barriers to use.
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Parálisis Cerebral , Niño , Humanos , Preescolar , Cuidadores , Emociones , Índice de Severidad de la EnfermedadRESUMEN
PURPOSE: To explore the benefits of a Partial Body Weight Support (PBWS) harness system within a play enriched environment on gross motor development and mastery motivation of infants with Down Syndrome (DS). METHODS: A randomized crossover study with 17 pre-walking infants with DS in two conditions-play with or without the harness engaged-each for 3×/week over 3 weeks with a 1-week washout. Assessments took place at baseline, crossover, and completion. RESULTS: Statistically and clinically significant changes were evident on the Gross Motor Function Measure-88; however, there were no significant changes in parent-reported mastery motivation. CONCLUSION: The combination of PBWS harness system support and high frequency-facilitated play within an enriched play environment positively affected gross motor development. The intervention did not impact mastery motivation skills, and the direct impact of the harness remains unclear.
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PURPOSE: To create and implement a next-generation, custom data logger to automatically track modified ride-on car (MROC) use in home and community settings, establish feasibility of long-term remote collection of community MROC use data, describe trends of MROC use, and explore parent perception of the MROC. METHODS: In this descriptive study, a custom data logger was constructed and integrated into MROCs using an Arduino Pro-Mini microprocessor to capture real-time use data remotely. RESULTS: It is feasible to automatically track MROC use in home and community settings. On average, MROC use trends appear consistent with caregiver reports and show higher initial use with steadily decreasing frequency over time, and varying bout duration and play session length, despite favorable caregiver perceptions of the cars. CONCLUSIONS: Remote tracking of MROC use may decrease burden on busy families and provide clinicians with valuable technology use data.
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Automóviles , Padres , Niño , HumanosRESUMEN
AIM: To understand the mobility experiences, supportive mobility device (SMD) use, and desired participation outcomes of individuals with cerebral palsy (CP) across the life span, and describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes. METHOD: In the second phase of an overarching study, focus groups were conducted with 164 participants (68 individuals with CP; 32 females, 36 males; mean age 17y 8mo, SD 11y 11mo, range 3-68y), 74 caregivers (50 females, 24 males), and 22 healthcare providers (14 females, eight males) across four US cities. Sessions were audio-recorded, transcribed, and analysed using constant comparison. RESULTS: Six themes emerged. Five presented across all stakeholder groups: (1) the system is broken; (2) equipment is simultaneously liberating and restricting; (3) adaptation across the life span; (4) designed for transport, not for living; and (5) sharing our stories and sharing resources. One theme (theme 6) was specific to healthcare providers: caught in the middle. INTERPRETATION: This qualitative study underscores the simultaneous value and frustration associated with SMDs as described by the community with CP, and recognition among all stakeholders of the need to improve connections and resource networks within the community with CP to improve SMD design and provision processes across device types and across the life span for individuals with CP. WHAT THIS PAPER ADDS: Supportive mobility devices (SMDs) were most often equated with freedom, participation, and independence. Frustration with SMDs across the life span persisted with regard to design, function, cost, and maintenance. Stakeholders in the community with cerebral palsy are seeking greater networking and resource sharing to enhance SMD provision processes. Access to appropriate SMDs across the life span and the need for system improvement are critical.
OBJETIVO: Compreender as experiências de mobilidade, o uso de dispositivos de mobilidade de apoio e os resultados de participação desejados de pessoas com paralisia cerebral (PC) ao longo da vida e descrever como as perspectivas de cuidados de reabilitação e recursos profissionais podem influenciar os processos de tomada de decisão de mobilidade e resultados. MÉTODO: Na segunda fase de um estudo abrangente, foram realizados grupos focais com 164 participantes (68 pessoas com PC; 32 mulheres, 36 homens; idade média de 17 anos e 8 meses, DP 11 anos e 11 meses, faixa de 3 a 68 anos), 74 cuidadores (50 mulheres, 24 homens) e 22 profissionais de saúde (14 mulheres, oito homens) em quatro cidades dos EUA. As sessões foram gravadas em áudio, transcritas e analisadas por meio de comparação constante. RESULTADOS: Emergiram seis temas. Cinco apresentados em todos os grupos de partes interessadas: (1) o sistema está quebrado; (2) o equipamento está simultaneamente liberando e restringindo; (3) adaptação ao longo da vida; (4) projetado para transporte, não para a vida; e (5) compartilhar nossas histórias e recursos. Um tema (tema 6) era específico para os profissionais de saúde: "pego no meio". INTERPRETAÇÃO: Este estudo qualitativo ressalta o valor e a frustração simultâneos associados aos dispositivos de mobilidade de apoio, conforme descrito pela comunidade com CP, e o reconhecimento entre todas as partes interessadas da necessidade de melhorar as conexões e redes de recursos dentro da comunidade com CP para melhorar os processos de projeto e fornecimento de SMD em todos os dispositivos tipos e ao longo da vida para pessoas com PC.
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Parálisis Cerebral , Dispositivos de Autoayuda , Adolescente , Femenino , Humanos , Masculino , Cuidadores , Longevidad , Investigación CualitativaRESUMEN
AIMS: On Track Developmental Monitoring System (DMS) is a novel series of tools to assist in shared-decision making, guide rehabilitation intervention based on functional ability levels, and promote episodic care service models. Further understanding of the acceptability, feasibility, and appropriateness of On Track DMS in clinical settings is critical. The purpose of this study was to understand clinician perspectives of the acceptability of On Track DMS and to identify potential implementation barriers and facilitators within pediatric physical therapist practice. METHODS: Three, day-long training workshops were conducted with 32 pediatric physical therapists across the US. Focus groups with 21 workshop participants were conducted following training. Results were audio recorded, transcribed verbatim, and coded into themes. RESULTS: Three themes emerged from the data: (1) Valuing the On Track Approach to Intervention; (2) Setting-Specific Needs and Challenges to Implementation; and (3) Training Material/Tool Strengths and Limitations. CONCLUSIONS: On Track DMS appears to have initial value and acceptability for pediatric physical therapists across practice settings. Perceived benefits include facilitation of data-driven practice and therapist/family collaboration to improve health outcomes for children with CP. Using this data to understand and assess barriers and facilitators to knowledge use are first steps in successfully implementing On Track DMS.
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Parálisis Cerebral , Fisioterapeutas , Técnicos Medios en Salud , Parálisis Cerebral/rehabilitación , Niño , Grupos Focales , Humanos , Investigación CualitativaRESUMEN
PURPOSE: Modified ride-on cars have emerged as an early powered mobility option for young children with disabilities. The purpose of this study was to identify, extract, and synthesize perceived barriers of modified ride-on car use reported in previous studies. METHODS: This study was descriptive using a qualitative content analysis of previously published studies identified from a systematic literature search. RESULTS: Categories of perceived barriers were identified: device, environmental, child-related perceived barriers regarding health, tolerance, and abilities, and caregiver-related perceived barriers regarding physical requirements, time, and motivation. Device and environmental perceived barriers were the most reported. CONCLUSIONS: Pediatric physical therapists play a critical role in working with families to promote their self-efficacy for using the modified ride-on car and their capacity for overcoming the inherent difficulties associated with use. Most of the reported perceived barriers are modifiable, at least to some degree, with likely effects on modified ride-on car use.
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Automóviles/estadística & datos numéricos , Niños con Discapacidad/estadística & datos numéricos , Dispositivos de Protección de la Cabeza/estadística & datos numéricos , Limitación de la Movilidad , Dispositivos de Autoayuda/estadística & datos numéricos , Adolescente , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , MasculinoRESUMEN
PURPOSE: The purpose of the study is to examine how perceived barriers change before and after a 3-month period of modified ride-on car use. METHODS: This study used a qualitative content analysis of perceived barriers. Fourteen caregivers (13 mothers; 1 grandmother) responded to a single-question, free-response survey before and after a 3-month period of modified ride-on car use. RESULTS: A total of 11 and 20 perceived barriers were reported before and after the 3-month period. Environmental barriers were the most frequently reported before and after the 3-month period. CONCLUSIONS: Pediatric physical therapists need to be aware of the potential perceived barriers that families may experience in regard to young children with disabilities using modified ride-on cars and determine strategies to support families on an individual basis.
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Accesibilidad Arquitectónica , Niños con Discapacidad/rehabilitación , Niños con Discapacidad/estadística & datos numéricos , Modalidades de Fisioterapia/instrumentación , Modalidades de Fisioterapia/normas , Guías de Práctica Clínica como Asunto , Dispositivos de Autoayuda/normas , Automóviles , Preescolar , Femenino , Humanos , Lactante , Masculino , Limitación de la Movilidad , Dispositivos de Autoayuda/estadística & datos numéricos , Encuestas y Cuestionarios , Factores de TiempoRESUMEN
OBJECTIVE: To examine the perceived value, benefits, drawbacks, and ideas for technology development and implementation of surface electromyography recordings in neurologic rehabilitation practice from clinical stakeholder perspectives. DESIGN: A qualitative, phenomenological study was conducted. In-depth, semistructured interviews and focus groups were completed. Sessions included questions about clinician perspectives and demonstrations of surface electromyography systems to garner perceptions of specific system features. SETTING: The study was conducted at hospital systems in a large metropolitan area. PARTICIPANTS: Adult and pediatric physical therapists, occupational therapists, and physiatrists from inpatient, outpatient, and research settings (N=22) took part in the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Interviews and focus groups were audio-recorded, transcribed verbatim, then coded for analysis into themes. RESULTS: Four major themes emerged: (1) low-tech clinical practice and future directions for rehabilitation; (2) barriers to surface electromyography uptake and potential solutions; (3) benefits of surface electromyography for targeted populations; and (4) essential features of surface electromyography systems. CONCLUSIONS: Surface electromyography systems were not routinely utilized for assessment or intervention following neurologic injury. Despite recognition of potential clinical benefits of surface electromyography use, clinicians identified limited time and resources as key barriers to implementation. Perspectives on design and surface electromyography system features indicated the need for streamlined, intuitive, and clinically effective applications. Further research is needed to determine feasibility and clinical relevance of surface electromyography in rehabilitation intervention.
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Electromiografía/psicología , Rehabilitación Neurológica/psicología , Terapeutas Ocupacionales/psicología , Fisiatras/psicología , Fisioterapeutas/psicología , Adulto , Actitud del Personal de Salud , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Rehabilitación Neurológica/instrumentación , Investigación CualitativaRESUMEN
PURPOSE: The purpose of this single-subject case series study is to determine the effect of modified ride-on car use in natural environments on mobility. METHOD: Three children younger than 2 years diagnosed with various disabilities participated in this 24-week study using a modified ride-on car in their home and community. RESULTS: All 3 children demonstrated an ability to independently use the modified ride-on car and enjoyed doing so. Two of the 3 children demonstrated clinically significant gains in mobility skills as measured by the Pediatric Evaluation of Disability Inventory. CONCLUSIONS: Modified ride-on car use is an emerging powered mobility device option for children younger than 2 years. Further research is needed to demonstrate the potential long-term gains of early powered mobility access to young children with disabilities.
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Niños con Discapacidad/rehabilitación , Dispositivos de Autoayuda , Preescolar , Evaluación de la Discapacidad , Femenino , Humanos , Lactante , Masculino , Limitación de la Movilidad , Modalidades de FisioterapiaRESUMEN
PURPOSE: The purpose of this study was to compare the physical activity and play behaviors of preschoolers without disabilities and 1 preschooler with physical disability. METHODS: Participants were 42 preschoolers without disabilities and 1 preschooler with physical disability (Child A). Child A used either crutches or a modified ride-on car while in the gymnasium and playground. RESULTS: In the gymnasium, Child A engaged in less solitary play and more parallel play while using the modified ride-on car compared with crutches. On the playground, Child A engaged in more sitting and less running while using crutches compared with preschoolers without disabilities. On the playground, Child A engaged in more peer interaction and less teacher interaction when using the modified ride-on car compared with crutches. CONCLUSIONS: For children with disabilities who may use assistive devices, clinicians, families, and teachers are encouraged to embrace a "right device, right time, right place" approach.
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Anomalías Múltiples/fisiopatología , Anomalías Múltiples/psicología , Juego e Implementos de Juego , Dispositivos de Autoayuda , Anomalías Múltiples/rehabilitación , Niño , Preescolar , Estudios Transversales , Ejercicio Físico , Femenino , Humanos , Masculino , Estudios Prospectivos , Conducta SocialRESUMEN
PURPOSE: The purpose of this report was to determine the feasibility of short-term modified ride-on car (ROC) use for exploration and enjoyment by children with complex medical needs. METHODS: A single-subject research design was used (n = 3; age, 6 months to 5 years). Children were video-recorded using their modified ROC. RESULTS: All children successfully learned how to independently drive a modified ROC. Two of the 3 children demonstrated high levels of enjoyment during use of a modified ROC. CONCLUSIONS: Modified ROC use is a feasible and enjoyable powered mobility device for children with complex medical needs.
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Niños con Discapacidad/rehabilitación , Modalidades de Fisioterapia , Dispositivos de Autoayuda , Preescolar , Femenino , Humanos , Lactante , MasculinoRESUMEN
Despite an increased application of social theory in assistive technology (AT) outcomes research, there continues to be a gap in integrating AT conceptual models in research design, data analysis, and results interpretation. This paper merged two preexisting AT models, the Human Activity Assistive Technology model (HAAT) and the interdependence frame for AT into a novel framework, the interdependence-HAAT model (i-HAAT). This model was used to examine the outcomes of former long-term nursing home residents using AT. The model was also used as a framework to facilitate quantitative variable identification and categorization, emphasize the interconnectivity between domain variables, and explore the infrastructural supports necessary for the successful community reintegration of deinstitutionalized AT users. Meaningful integration of theory into practice is the essential next step in generating socially responsive research that addresses AT consumer needs and moves the field forward.
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PURPOSE: The purpose of this study was to establish and understand the provision process and impacts of first mobility aids for children with cerebral palsy (CP) in the United States - specifically orthoses, walkers and gait-trainers. METHODS: We performed a mixed-methods study including surveys and semi-structured interviews of caregivers of young children with CP (n = 10) and clinicians who work with young children with CP (n = 29). We used content analysis for the surveys and inductive coding for the interviews. RESULTS: Four themes emerged: (1) first mobility aids have mixed impacts and use patterns, (2) there is varied caregiver education and understanding about mobility aids, (3) clinician knowledge, consistency and connection impact care and (4) numerous access barriers exist for families, and there are still opportunities for improvement across all domains. CONCLUSIONS: This research provides insights into the lived experiences of clinicians and caregivers of young children with CP regarding the prescription, provision, use and impact of first mobility aids, specifically ankle foot orthoses and walkers/gait trainers. This study not only provides researchers and clinicians with an understanding of the current status of the prescription and provision process in the United States, but also offers suggestions for improvements of the process and mobility aids themselves. These results have implications for future research, mobility aid, design and the provision process of first mobility aids.
Implications for rehabilitationMore detailed education and training during the prescription and early use process of first mobility aids has been highlighted as an unmet need by many families.The current timeline for participants receiving first mobility aids after prescription such as ankle-foot orthoses and walkers ranges from 2 to 9 months, which may delay access to on-time mobility for young children.Clinicians and caregivers highlight benefits of ankle-foot orthoses such as improved gait and standing alignment but also point out these aids can be uncomfortable and inhibit functional floor mobility. Clinicians highlight benefits of walkers such as supporting upright mobility and independence, but also point out challenges with physical barriers in the community and contributions to poor postural habits. Open discussion of these pros and cons with caregivers may be an important part of the provision process.Understanding the impact of different types and levels of clinician education and training regarding first mobility aids on confidence and decision-making during provision processes is valuable to improve practice and device design.
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Americans with disabilities represent the largest historically underserved and marginalized health disparity population in the United States. This perspective piece will raise the awareness of physical therapy faculty and clinicians on gaps in health care provider knowledge about disability and provide actionable strategies, frameworks, and resources available to improve disability competence to make changes in clinical education and practice. In this perspective piece, 3 contributions are made. First, health disparities experienced by Americans with disabilities as a result of health care providers' biased assumptions about disability and lack of disability competence are described through an in-depth illustration of lived experiences of people with disabilities. Second, a discussion of disability competence in physical therapist education is provided. Finally, critical and evidence-based insights and actionable frameworks and resources to address disability competence training gaps and to promote anti-ableist practice are provided.
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PURPOSE/OBJECTIVE: Early powered mobility (PM) experiences can be essential facilitators of self-initiated mobility, socialization, and exploration for young children with disabilities. Cerebral palsy (CP) and developmental delay are two of the most common diagnoses associated with motor disability in young children with 1 in 345 children diagnosed with CP and 1 in 6 with developmental delay in the US. The purpose of this study was to explore the longitudinal experiences and caregiver perceptions of socio-emotional development in particular, in young children with disabilities during modified ride-on car (ROC) use. RESEARCH METHOD/DESIGN: A qualitative, grounded theory approach was used. Semi-structured interviews were conducted with 15 families (children ages 1-4 with CP or developmental delay) at baseline, 6 months (as able due to COVID), and 1 year following ROC introduction. Data were coded independently by three researchers using constant comparison until data saturation occurred and themes emerged. RESULTS: Four themes emerged from the data: "Leveling the Playing Field," "Breaking Down Barriers," "Fun and Work: ROC as Toy and Therapy Device," and "Mobility is a Pathway to Autonomy." Conclusions/Implication: Children and caregivers viewed ROCs as both fun and therapeutic, consistently identifying perceived benefits for children's socio-emotional development. This qualitative study provides a better understanding of the complexities and impact of ROCs on children and their families in the socio-emotional domain and may help facilitate clinical decision-making when introducing PM to young children with disabilities as part of a multimodal approach to early intervention. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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COVID-19 , Parálisis Cerebral , Niños con Discapacidad , Trastornos Motores , Humanos , Niño , Preescolar , Niños con Discapacidad/psicología , Automóviles , EmocionesRESUMEN
PURPOSE: The aim of this study was to co-develop research priorities and identify meaningful research questions with a diverse group of stakeholders representing the CP community for implementation in subsequent research activities. The overarching aim of this research was to 1) Understand the mobility experiences, supported mobility device (SMD) use, and desired participation outcomes of people with cerebral palsy (CP) across the lifespan; and 2) Describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes. MATERIALS AND METHODS: A three-round modified Delphi consensus study was conducted with a stakeholder advisory panel consisting of three adults with CP, two parents of children with CP, and four SMD providers. RESULTS: The advisory panel identified 11 unique topical categories focused on SMD selection and use, stratified by age group and stakeholder role. Questions or statements within each category were ranked, and top consensus and concordance statements were retained, reviewed, and refined for use in a co-developed focus group guide. Priorities were identified in three main groupings: (1) Age/GMFCS level/Environment-related; (2) Individual with CP/Caregiver need-related; and (3) Clinician/provider partnership-related. DISCUSSION: A modified Delphi process was a useful tool for stakeholders in co-developing research priorities related to SMD use across the lifespan. Drawing on the lived expertise of stakeholders is important in facilitating improved research translation in the CP community.
IMPLICATIONS FOR REHABILITATIONRoutine incorporation of stakeholder voices in research and clinical practice can critically inform teams without lived experience of cerebral palsy to co-create meaningful priorities and focus areas for supportive mobility device provision and use from a lived perspective.Stakeholders identified that access to trial equipment, device adaptability, provider knowledge and training, and a focus on the presence or absence of shared decision-making are among the top research priorities when engaging with individuals with cerebral palsy who use supportive mobility devices.Given the heterogeneous nature of cerebral palsy and evolving mobility needs for individuals across different Gross Motor Function Classification System levels, a lifespan perspective and future-oriented approach to supportive mobility device research and clinical practice are crucial to address device design and implementation as well as barriers to quality provision practices.
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Mobility is a fundamental human right and is supported by the United Nations and the ON Time Mobility framework. The purpose of this study was to understand the effect of a powered mobility intervention on developmental changes of children with cerebral palsy (CP). This study was a randomized, crossover clinical trial involving 24 children (12-36 months) diagnosed with CP or with high probability of future CP diagnosis based on birth history and current developmental status. Children received the Explorer Mini and a modified ride-on car in randomized order, each for 8 weeks. The Bayley Scales of Infant and Toddler Development-4th Edition was administered at baseline, mid-study, and end-of-study. Raw change scores were used for analysis. Total minutes of use per device was categorized as low or high use for analysis based on caregiver-reported driving diaries. Explorer Mini: The high use group exhibited significantly greater positive change scores compared to the low use group on receptive communication, expressive communication, and gross motor subscales (p < 0.05). Modified ride-on car: No significant differences between low and high use groups. Regardless of device, low use was associated with no significant developmental change and high use was associated with positive developmental changes. Mobility access is critical to maximize the development of children with CP and may be augmented by using powered mobility devices. Results may have implications for the development of evidence-based guidelines on dosage for powered mobility use.
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PURPOSE: Adapted ride-on cars (ROC) are an affordable, power mobility training tool for young children with disabilities. Previous qualitative research has identified environmental factors, such as weather and adequate drive space, as barriers to families' adoption of their ROC. However, we do not currently know the relationship between the built environment and ROC usage. MATERIALS AND METHODS: In our current study, we quantified the driving patterns of 14 children (2.5 ± 1.45 years old, 8 male: 6 female) using ROCs outside and inside of their homes over the course of a year using a custom datalogger and geospatial data. To measure environmental accessibility, we used the AccessScore from Project Sidewalk, an open-source accessibility mapping initiative, and the Walk Score, a measure of neighborhood pedestrian-friendliness. RESULTS: The number of play sessions with the ROC ranged from 1 to 76; 4 participants used it less than 10 times and 4 participants used it more than 50 times. Our findings indicate that more play sessions took place indoors, within the participants' homes. However, when the ROC was used outside the home, children engaged in longer play sessions, actively drove for a larger portion of the session, and covered greater distances. Most children tended to drive their ROCs in close proximity to their homes, with an average maximum distance from home of 181 meters. Most notably, we found that children drove more in pedestrian-friendly neighborhoods and when in proximity to accessible paths. CONCLUSIONS: The accessibility of the built environment is paramount when providing any form of mobility device to a child. Providing an accessible place for a child to move, play, and explore is critical in helping a child and family adopt the mobility device into their daily life.
IMPLICATIONS FOR REHABILITATION: GPS OF ROC USAGERide-on cars provided a novel means for young children with disabilities to explore their home and community environments.Children drove their adapted ride-on cars for longer periods of time outside than inside, and in close proximity to their homes.The identification of an accessible route increased driving frequency and drive session duration. Recommending accessible routes and play locations where families can use their adapted ride-on car may be an important aspect of increasing mobility technology use.Because there were a higher number of play sessions inside, it is important to consider indoor accessibility when designing and implementing mobility technology for young children.
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BACKGROUND: Cerebral palsy (CP) affects roughly 3 per 1000 births in the United States and is the most common pediatric developmental motor disability. Ankle foot orthoses (AFOs) are commonly prescribed to provide support and improve function for individuals with CP. OBJECTIVES: The study objective was to evaluate the lived experiences of individuals with CP and their caregivers regarding AFO access, use, and priorities. We examined experiences around the perceived purpose of AFOs, provision process, current barriers to use, and ideas for future AFO design. STUDY DESIGN: Secondary qualitative data analysis. METHODS: Secondary data analysis was performed on semistructured focus groups that included 68 individuals with CP and 74 caregivers. Of the focus group participants, 66 mentioned AFOs (16 individuals with CP and 50 caregivers). Deidentified transcripts were analyzed using inductive coding, and the codes were consolidated into themes. RESULTS: Four themes emerged: 1) AFO provision is a confusing and lengthy process, 2) participants want more information during AFO provision, 3) AFOs are uncomfortable and difficult to use, and 4) AFOs can benefit mobility and independence. Caregivers and individuals with CP recommended ideas such as 3D printing orthoses and education for caregivers on design choices to improve AFO design and provision. CONCLUSIONS: Individuals with CP and their caregivers found the AFO provision process frustrating but highlight that AFOs support mobility and participation. Further opportunities exist to support function and participation of people with CP by streamlining AFO provision processes, creating educational materials, and improving AFO design for comfort and ease of use.
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Parálisis Cerebral , Personas con Discapacidad , Ortesis del Pié , Trastornos Motores , Humanos , Niño , Tobillo , CuidadoresRESUMEN
OBJECTIVE: The aims of this study are 2-fold: (1) to evaluate a powered mobility intervention to promote developmental, activity, and participation outcomes of young children aged 12 to 36 months who have cerebral palsy; and (2) to compare the use patterns (frequency, duration, environment) of 2 different powered mobility options. METHODS: This study is a multisite, mixed-methods, doubly counterbalanced, randomized, crossover clinical trial, where intervention A is the Permobil Explorer Mini and intervention B is a modified ride-on toy car. The study will take place in rural and urban home and community settings surrounding 3 sites (Washington, Oregon, and Michigan). There will be 24 child-caregiver dyads in the study (8 dyads per site). Primary outcome measures include the Bayley Scale of Infant and Toddler Development, the Youth and Children's Participation and Environment Measure, the Assessment for Learning Power mobility use, automated device use tracking logs, caregiver semistructured interviews, and the Acceptability, Feasibility, and Intervention Appropriateness Measures. Secondary measures include the Child Engagement in Daily Life and caregiver diaries. IMPACT: The use of powered mobility devices for young children with cerebral palsy has gained traction, with evidence that the use of powered mobility at young ages complements (rather than detracts from) other interventions focused on more traditional mobility skills such as crawling and walking. However, research is limited, and often comprised of low-level evidence. Given the clearance of the first powered mobility device for infants, the Permobil Explorer Mini, and the recent popularity of modified ride-on toy cars as an alternative for powered mobility for young children with disabilities, this study will contribute to rigorous examination of the developmental outcomes, use patterns, and caregiver perceptions of these novel devices.