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1.
Am J Med Genet A ; 194(5): e63538, 2024 05.
Artigo em Inglês | MEDLINE | ID: mdl-38214061

RESUMO

Individuals with differing forms of skeletal dysplasias (SD) frequently report impaired mobility and symptoms. With the objetive to evaluate mobility and associated symptoms in people with SD at an Argentinian pediatric hospital, using an Argentinian version of the Screening Tool for Everyday Mobility and Symptoms (STEMS), a simple questionnaire that allows clinicians to quickly identify the presence of symptoms associated with mobility in people with SD, while considering different environmental settings and the use of assistive devices, an analytical study of a consecutive sample of patients older than 5 years with SD and their affected relatives was carried out.Diagnosis, comorbidities, socioenvironmental, therapeutic, auxological and mobility variables were recorded. The presence and intensity of symptoms was noted through use of both the STEMS and validated scales. Descriptive, association and correlation analyzes were performed. One hundred and nineteen individuals with SD were enrolled in the study and divided into groups: Osteogenesis Imperfecta (OI, n = 55), Achondroplasia (ACH, n = 36) and Other SD resulting in disproportionate short stature (n = 28). Mobility assistive devices were almost exclusively used by individuals with OI. They were more frequently used by individuals with overweight and obesity, more severe form of the disease and in the outdoor settings. Two thirds (66.4%) of the individuals assessed in this study reported pain, 87.4% reported fatigue, and 58.8% reported both pain and fatigue. The intensity of symptoms was similar between groups and correlated with age and auxological variables. The STEMS was clear, easy and quick to use for identifying presence of pain and fatigue in this population group. The STEMS proved to be a simple and useful tool for evaluating functional mobility and associated symptoms in our population of individuals with SD.


Assuntos
Acondroplasia , Osteogênese Imperfeita , Criança , Humanos , Osteogênese Imperfeita/diagnóstico , Acondroplasia/diagnóstico , Acondroplasia/epidemiologia , Acondroplasia/complicações , Inquéritos e Questionários , Dor , Fadiga/diagnóstico
2.
Health Expect ; 27(5): e70033, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39340297

RESUMO

INTRODUCTION: People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being. METHODS: We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling N = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz. RESULTS: Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations. CONCLUSIONS: This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment. PATIENT OR PUBLIC CONTRIBUTION: This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices. TRIAL REGISTRATION: German Clinical Trials Register number: DRKS00025532.


Assuntos
Grupos Focais , Esclerose Múltipla , Pesquisa Qualitativa , Tecnologia Assistiva , Humanos , Esclerose Múltipla/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Transtornos Neurológicos da Marcha/reabilitação , Transtornos Neurológicos da Marcha/psicologia , Idoso , Limitação da Mobilidade , Pessoas com Deficiência/psicologia
3.
Phys Occup Ther Pediatr ; 38(5): 493-509, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29236563

RESUMO

AIMS: Children with mobility related disabilities often experience limited participation and access to social interactions. An emerging pediatric powered mobility device are modified ride-on cars that provide self-directed mobility experiences to children with disabilities. This study aimed to determine: (1) the feasibility of a modified ride-on car intervention during an inclusive playgroup, (2) the effect of a modified ride-on car intervention on the play behaviors of children with and without mobility related disabilities. METHOD: A single-subject research design was implemented. Thirteen children participated in a weekly inclusive playgroup. The five children with mobility related disabilities were provided modified ride-on cars during the intervention. Children's play behaviors were classified with Howes' Peer Play Scale. Intervention effects were examined using nonoverlap of all pairs (NAP). RESULTS: The intervention was feasible based on participants' good attendance, retention rates, and successful use of modified ride-on cars. Overall children did not experience significant changes in play behaviors, with a few exceptions for decreased solitary, and increased parallel play, and/or direct peer interaction, among children with mobility related disabilities. Future research could examine modified ride-on car use by children with mobility related disabilities focusing on changes in unique play interactions between children with and without disabilities.


Assuntos
Crianças com Deficiência/reabilitação , Relações Interpessoais , Jogos e Brinquedos/psicologia , Tecnologia Assistiva , Comportamento Infantil/psicologia , Pré-Escolar , Estudos de Viabilidade , Feminino , Humanos , Lactente , Masculino
4.
J Rehabil Res Dev ; 51(9): 1411-25, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25785910

RESUMO

Wheelchairs are an essential assistive device for many individuals with injury or disability. Manual wheelchairs provide a relatively low-cost solution to the mobility needs of such individuals. Furthermore, they provide an effective means of improving the user's cardiopulmonary function and upper-limb muscle strength. However, manual wheelchairs have a loss gross mechanical efficiency, and thus the risk of user fatigue and upper-limb injury is increased. Electric-powered wheelchairs reduce the risk of injury and provide a more convenient means of transportation. However, they have a large physical size and are relatively expensive. Accordingly, the present study utilizes a quality function deployment method to develop a wheelchair with a user-selectable manual/electric propulsion mode and an auxiliary solar power supply system. The auxiliary solar power supply increased the travel range of the wheelchair by approximately 26% compared with that of a wheelchair powered by battery alone. Moreover, the wheelchair has a modular design and can be disassembled and folded for ease of transportation or storage. Overall, the present results suggest that the proposed wheelchair provides an effective and convenient means of meeting the mobility needs of individuals with mobility difficulties.


Assuntos
Fontes de Energia Elétrica , Energia Solar , Cadeiras de Rodas , Adulto , Equipamentos Médicos Duráveis , Desenho de Equipamento , Segurança de Equipamentos , Feminino , Humanos , Masculino , Sistemas Homem-Máquina , Limitação da Mobilidade , Adulto Jovem
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