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1.
Dev Med Child Neurol ; 66(3): 333-343, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37515376

RESUMO

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.


Assuntos
Paralisia Cerebral , Criança , Humanos , Pré-Escolar , Cuidadores , Emoções , Índice de Gravidade de Doença
2.
Pediatr Phys Ther ; 36(1): 53-60, 2024 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-37820364

RESUMO

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.


Assuntos
Automóveis , Pais , Criança , Humanos
3.
Health Expect ; 26(6): 2500-2513, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37596733

RESUMO

INTRODUCTION: In Brazil, more than 3500 children with congenital Zika syndrome (CZS) face difficulties participating in activities of daily living, which may be aggravated by health emergencies, such as the COVID-19 pandemic. Participation could be defined as the individual's involvement in daily life situations, and participation restrictions are problems that may arise in involvement in everyday situations. AIM: To explore the daily lives of children with CZS during the COVID-19 pandemic using photographic narratives captured by mothers and discuss possible strategies to improve participation results. METHODS: In this participatory action research, seven young Brazilian mothers acted as co-researchers using photovoice to describe the experiences of their children with CZS (from 2 to 5 years old). Also, mothers contributed to validate the contents. The research was conducted online and included the following steps: pilot study, recruitment, individualized training, sociodemographic interview, photovoice training, photo taking, focus group for contextualization, data transcription and analysis and validation of analyses by the mothers. RESULTS: Content analysis revealed five categories that influenced the participation of the children: participation preferences, family relationships, access to healthcare, access to education and social isolation. Regarding participation preferences, mothers reported their children's desire to play with peers and family members and have autonomy. Mothers described the family environment as a happy, peaceful and safe place for the children. Lack of therapy was perceived to negatively impact the health of children; thus, treatments were considered essential for child development. Access to education included accessibility of remote education and a perceived lack of infrastructure and pedagogical preparation. Last, social isolation due to COVID-19 directly affected the daily lives and behaviour of the children, interrupting therapies and medical appointments. CONCLUSION: The photos and narratives captured several aspects of the daily lives of children with CZS impacted by the COVID-19 pandemic, reinforcing the importance of considering the negative effects of social isolation and offering education and social assistance to promote participation and integral health. PATIENT/PUBLIC CONTRIBUTION: Consistent with a participatory action research framework, Mothers acted as co-researchers and participated in all stages of the research, especially in validating the data analysed by the researchers.


Assuntos
COVID-19 , Infecção por Zika virus , Zika virus , Feminino , Criança , Humanos , Pré-Escolar , Infecção por Zika virus/epidemiologia , Infecção por Zika virus/congênito , Atividades Cotidianas , Pandemias , Projetos Piloto , COVID-19/epidemiologia , Mães , Surtos de Doenças , Brasil/epidemiologia
4.
Dev Med Child Neurol ; 64(11): 1392-1401, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35426449

RESUMO

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.


Assuntos
Paralisia Cerebral , Tecnologia Assistiva , Adolescente , Feminino , Humanos , Masculino , Cuidadores , Longevidade , Pesquisa Qualitativa
5.
Phys Occup Ther Pediatr ; 42(4): 384-402, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35361046

RESUMO

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.


Assuntos
Paralisia Cerebral , Fisioterapeutas , Pessoal Técnico de Saúde , Paralisia Cerebral/reabilitação , Criança , Grupos Focais , Humanos , Pesquisa Qualitativa
6.
Pediatr Phys Ther ; 34(4): 546-550, 2022 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-35943383

RESUMO

Mobility is a human right. The traditional definition of mobility in physical therapy practice is centered on translocation and, while accurate, is not comprehensive. In this article, we propose the ON Time Mobility framework: that all children have the right to be mobile throughout their development to explore, engage in relationships, and develop agency to cocreate their lives. This perspective highlights interconnected principles of timing, urgency, multimodal, frequency, and sociability to begin discussions on supporting the right to hours of active mobility each day for all children. We propose critical evaluation and discussion of these principles followed by a call to action to shift our conceptualization and enactment of mobility. This mobility rights perspective challenges current medical systems, industry, and government to collaborate with children with disabilities, their families and communities to support mobility as a source of physical and social interactions that define and develop individuals (see Supplemental Digital Content 1, the Video Abstract, available at: http://links.lww.com/PPT/A398 ).


Assuntos
Pessoas com Deficiência , Modalidades de Fisioterapia , Criança , Humanos
7.
Occup Ther Health Care ; 36(1): 63-83, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34459721

RESUMO

Fat people are highly stigmatized, and anti-fat bias is pervasive resulting in stigma, prejudice, and discrimination, including in health care. The aim of this study was to explore occupational and physical therapy assistants' anti-fat biases. We analyzed secondary weight implicit association tests from 5,671 occupational/physical therapy assistants. The overwhelming majority (82%) of occupational/physical therapy assistants were implicitly prejudiced against fat people. Interventions for occupational/physical therapy assistants' anti-fat biases are critical, especially with increasing prevalence and responsibilities of occupational/physical therapy assistants in the provision of rehabilitation services.


Assuntos
Terapia Ocupacional , Assistentes de Fisioterapeutas , Preconceito de Peso , Viés , Humanos , Preconceito
8.
Pediatr Phys Ther ; 32(3): 243-248, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32604369

RESUMO

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.


Assuntos
Acessibilidade Arquitetônica , Crianças com Deficiência/reabilitação , Crianças com Deficiência/estatística & dados numéricos , Modalidades de Fisioterapia/instrumentação , Modalidades de Fisioterapia/normas , Guias de Prática Clínica como Assunto , Tecnologia Assistiva/normas , Automóveis , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Limitação da Mobilidade , Tecnologia Assistiva/estatística & dados numéricos , Inquéritos e Questionários , Fatores de Tempo
9.
Pediatr Phys Ther ; 32(2): 129-135, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32150029

RESUMO

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.


Assuntos
Automóveis/estatística & dados numéricos , Crianças com Deficiência/estatística & dados numéricos , Dispositivos de Proteção da Cabeça/estatística & dados numéricos , Limitação da Mobilidade , Tecnologia Assistiva/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino
10.
Arch Phys Med Rehabil ; 100(4): 663-675, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30392855

RESUMO

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.


Assuntos
Eletromiografia/psicologia , Reabilitação Neurológica/psicologia , Terapeutas Ocupacionais/psicologia , Fisiatras/psicologia , Fisioterapeutas/psicologia , Adulto , Atitude do Pessoal de Saúde , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Reabilitação Neurológica/instrumentação , Pesquisa Qualitativa
11.
Pediatr Phys Ther ; 30(1): 50-56, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-29252838

RESUMO

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.


Assuntos
Crianças com Deficiência/reabilitação , Tecnologia Assistiva , Pré-Escolar , Avaliação da Deficiência , Feminino , Humanos , Lactente , Masculino , Limitação da Mobilidade , Modalidades de Fisioterapia
12.
Pediatr Phys Ther ; 29(1): 30-37, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27984464

RESUMO

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.


Assuntos
Anormalidades Múltiplas/fisiopatologia , Anormalidades Múltiplas/psicologia , Jogos e Brinquedos , Tecnologia Assistiva , Anormalidades Múltiplas/reabilitação , Criança , Pré-Escolar , Estudos Transversais , Exercício Físico , Feminino , Humanos , Masculino , Estudos Prospectivos , Comportamento Social
13.
Pediatr Phys Ther ; 28(1): 100-7, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27088698

RESUMO

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.


Assuntos
Crianças com Deficiência/reabilitação , Modalidades de Fisioterapia , Tecnologia Assistiva , Pré-Escolar , Feminino , Humanos , Lactente , Masculino
14.
Assist Technol ; : 1-10, 2024 Apr 11.
Artigo em Inglês | MEDLINE | ID: mdl-38602498

RESUMO

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.

15.
Artigo em Inglês | MEDLINE | ID: mdl-38722725

RESUMO

Utilization of hand-tracking cameras, such as Leap, for hand rehabilitation and functional assessments is an innovative approach to providing affordable alternatives for people with disabilities. However, prior to deploying these commercially-available tools, a thorough evaluation of their performance for disabled populations is necessary. In this study, we provide an in-depth analysis of the accuracy of Leap's hand-tracking feature for both individuals with and without upper-body disabilities for common dynamic tasks used in rehabilitation. Leap is compared against motion capture with conventional techniques such as signal correlations, mean absolute errors, and digit segment length estimation. We also propose the use of dimensionality reduction techniques, such as Principal Component Analysis (PCA), to capture the complex, high-dimensional signal spaces of the hand. We found that Leap's hand-tracking performance did not differ between individuals with and without disabilities, yielding average signal correlations between 0.7-0.9. Both low and high mean absolute errors (between 10-80mm) were observed across participants. Overall, Leap did well with general hand posture tracking, with the largest errors associated with the tracking of the index finger. Leap's hand model was found to be most inaccurate in the proximal digit segment, underestimating digit lengths with errors as high as 18mm. Using PCA to quantify differences between the high-dimensional spaces of Leap and motion capture showed that high correlations between latent space projections were associated with high accuracy in the original signal space. These results point to the potential of low-dimensional representations of complex hand movements to support hand rehabilitation and assessment.


Assuntos
Mãos , Análise de Componente Principal , Gravação em Vídeo , Humanos , Mãos/fisiologia , Masculino , Feminino , Adulto , Pessoas com Deficiência/reabilitação , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Adulto Jovem , Algoritmos , Movimento/fisiologia
16.
Disabil Rehabil Assist Technol ; : 1-12, 2024 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-38344906

RESUMO

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.

17.
Disabil Rehabil Assist Technol ; : 1-11, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38715345

RESUMO

AIM: The congenital Zika Syndrome (CZS) often leads to severe motor impairment in affected children, making independent walking unlikely. Early introduction of motorized mobility through ride-on cars has been recommended for young children with severe motor impairment, enabling independent movement in various environments. This study aims to explore mothers' perceptions of their children's experiences while using ride-on cars at home and in the community, focusing on children with CZS. METHODS: This is a qualitative and descriptive study design using the Photovoice method. Four mothers of children with CZS, participating in the 'Go Zika Go' intervention project, were included. The research involved the following six steps: 1) Presentation of guide questions and Photovoice training; 2) Participants capturing photos; 3) Individual interviews to contextualize the photos; 4) Transcription and data analysis using thematic analysis principles; 5) Validation of analyses by mothers; and 6) Exhibition of photos to the community. RESULTS: The mothers and researchers selected the 21 most relevant photographs, which revealed five main themes related to the use of motorized ride-on cars: 1) Experiences of participation; 2) Independence in mobility; 3) Characteristics of mobility devices; 4) Family support; and 5) Accessibility of the environment. CONCLUSION: The narratives provided by participants, along with photographs depicting the daily lives of children with CZS, shed light on aspects of functionality, autonomy, and participation. The use of these devices contributes to overall equity, breaking down social and cultural barriers and enabling children with disabilities to be seen as equals by their peers.


To understand the barriers and facilitators experienced by children with Congenital Zika Syndrome (CZS) when using motorized ride-on cars at home and in the community can contribute to the planning of interventions aimed at implementing motorized mobility as an intervention modality for children with severe motor and cognitive impairments in low- and middle-income countries.The Photovoice method can be useful to capture the experiences of children with severe disabilities such as Congenital Zika Syndrome while using adapted motorized ride-on cars.Involving mothers of children with severe disabilities as co-researchers can contribute to the advancement of more relevant research for the public/patient, considering that they are specialists by knowledge.The use of motorized mobility for children with CZS can minimize social disadvantages, favor equity in its entirety, providing for the breakdown of cultural and attitudinal barriers.

18.
Disabil Rehabil Assist Technol ; : 1-10, 2023 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-37390848

RESUMO

PURPOSE: This study explored employment experiences and attitudes of adults who acquired mobility, motor, and/or communication disabilities and who use assistive technologies. MATERIALS AND METHODS: Semi-structured interviews were conducted with seven adults about their employment experiences after acquiring their disabilities. After analysis of interview results, six participants completed surveys about their attitudes towards crowdsourcing and remote work. RESULTS: Findings indicate that adults can continue working with accommodations when they feel supported and valued by their employer. However, participants frequently compared their pre-disability work performance with their post-disability performance and at times, left work because they did not feel they were performing to their own expectations, regardless of the support of their employer. Participants experienced feelings of loss, regret, and identity change after acquiring their disabilities and after leaving work. Most participants did not have specific knowledge of available work alternatives which could accommodate their health and accessibility needs. When presented with accessible work alternatives, the majority of participants increased their interest in learning more about those options. CONCLUSIONS: Whether through work or other pursuits, individuals in this population retain a strong desire to participate and contribute to society. However, it should not be assumed that adults with acquired disabilities are inherently aware of available, alternative options to traditional work. Future research on increasing awareness of accessible options for societal engagement for this population should be explored.


Clinicians should not assume that clients are aware of the available range of work accommodations and alternatives.Clinicians should share a variety of accessible, computer-based, flexible work alternatives with clients, including volunteer and active leisure activities.Rehabilitation for adults with acquired disabilities should include addressing a change in identity, particularly when it comes to identity associated with contributing to society.

19.
Disabil Rehabil Assist Technol ; : 1-9, 2023 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-37452575

RESUMO

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.

20.
Behav Sci (Basel) ; 13(5)2023 May 10.
Artigo em Inglês | MEDLINE | ID: mdl-37232636

RESUMO

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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