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1.
Phys Occup Ther Pediatr ; : 1-14, 2024 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-38314608

RESUMO

AIMS: Evaluate changes in two-wheel cycling skills and biking participation goals for children with neurodevelopmental disorders (ND) receiving a home visit and email following iCan Bike camp. METHODS: Participants: 11 children with ND, 9-16 years, and one of their parents. A cycling skills checklist, two-wheel riding Goal Attainment Scaling (GAS), and biking participation GAS were completed before camp (T1), at support visit after camp (T2), and three months following camp (T3). Parents completed biking practice logs. Participants received a support visit to provide instruction, coaching, and address questions, and an email to check progress. RESULTS: Significant changes were made in two-wheel riding GAS T1 to T2 (p = 0.01), biking participation GAS T2 to T3 (p = 0.02), and cycling skills T1 to T2 (p = 0.01) and T2 to T3 (p = 0.02). Practice frequency was related to cycling skills (0.72, p = 0.01) and biking participation (0.86, p < 0.001); cycling skills were related to biking participation (0.81, p = 0.003). CONCLUSION: Children improved cycling skills and biking participation following camp, support visit, and email check-in. Children who practiced more had greater cycling skills and biking participation. Encouraging weekly bicycling and providing support may promote cycling skills and participation following camp.

2.
Disabil Rehabil ; 46(6): 1167-1172, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37026412

RESUMO

PURPOSE: Translate, investigate reliability, and construct validity of the Brazilian Early Activity Scale for Endurance (EASE). MATERIALS AND METHODS: Translation followed the international guidelines. Test-retest reliability was tested by 100 parents of children with cerebral palsy (CP): 18 months-5 years and 6-11 years. To determine construct validity, 94 parents of typically children completed the EASE. Statistical analysis included Bland-Altman, Intraclass Correlation Coefficient (ICC), Internal Consistency, and Floor and Ceiling Effect. RESULTS: The majority of the sample consisted of children with CP in GMFCS (IV-V). EASE showed good test-retest reliability for younger (ICC = 0.8) and excellent test-retest reliability for older children with CP (ICC = 0.9), and good internal consistency of 0.7 and 0.8 for the young and older group, respectively. Bland-Altman showed the bias close to zero, with no ceiling or floor effect. Regarding construct validity, younger children showed lower scores when compared to the older children. Endurance differed significantly between children with CP who were walking and those who were not walking and also for age groups. Children with CP showed lower endurance compared to typically participants in the same age group. CONCLUSIONS: Brazilian EASE is reliable and valid to estimate endurance in children with CP. Results provide evidence of construct validity.


Endurance to physical activity is an important construct to be evaluated and that directly interferes with the health and quality of life of children with Cerebral Palsy (CP).The Brazilian-Portuguese version of the 4-item Early Activity Scale for Endurance (EASE) is a valid and reliable scale to assess endurance to physical activity in children with CP.


Assuntos
Paralisia Cerebral , Caminhada , Criança , Humanos , Adolescente , Reprodutibilidade dos Testes , Brasil , Portugal , Paralisia Cerebral/diagnóstico , Inquéritos e Questionários , Psicometria/métodos
3.
Dev Med Child Neurol ; 2023 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-38140720

RESUMO

AIM: To examine the effects of the Pathways and Resources for Engagement and Participation (PREP) intervention during the COVID-19 pandemic on (1) activity performance and satisfaction, and (2) motor, cognitive, and affective body functions. METHOD: An interrupted time-series design with multiple baselines across 21 young people (13 females, eight males) aged 16 to 25 years (median = 21 years 5 months) with physical disabilities was employed. The young people engaged in an 8-week self-chosen leisure activity (e.g. football, piano, photography) at their home or community. The Canadian Occupational Performance Measure (COPM) assessed activity performance and satisfaction weekly. Mental health problems, including affective and cognitive outcomes, were assessed weekly using the Behavior Assessment System for Children, Third Edition. Motor functions (e.g. trunk control, reaching, strength) were assessed biweekly. Linear mixed-effects models were used. RESULTS: The intervention had large effects on activity performance (0.78) and satisfaction (0.88) with clinically significant change in COPM scores (2.6 [95% confidence interval {CI}: 2.0-3.2] and 3.2 points [95% CI: 2.4-3.9] respectively). Young people without mental health problems at baseline benefited more from the intervention (p = 0.028). Improvements in at least one domain of body function occurred in 10 young people especially for motor outcomes. INTERPRETATION: Results demonstrate the effectiveness of PREP during adverse times and suggest benefits going beyond participation, involving outcomes at the body-function level.

4.
Dev Med Child Neurol ; 65(6): e61-e69, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-36529898

RESUMO

A CIF pode ser usada para mapear uma série de desfechos por meio de estudos de desenvolvimento. Os principais desfechos investigados em crianças com PC foram atividade e estrutura e função corporal. Pouco tem sido explorado os desfechos de participação e fatores contextuais ao longo do tempo. A principal classificação utilizada para estratificar os participantes foi o Sistema de Classificação da Função Motora Grossa. Estudos futuros devem ampliar seu foco para diferentes áreas da CIF, e na transição para a vida adulta. Estudos sobre o desenvolvimento de indivíduos com PC ajudam terapeutas e pais a planejarem abordagens de tratamento e prognóstico futuro. Os principais desfechos investigados em indivíduos com PC foram atividade e estruturas e funções corporais. Pouco tem sido explorado em desfechos de participação e de fatores contextuais ao longo do tempo.


OBJETIVOS: Identificar e fornecer uma visão geral descritiva dos estudos de desenvolvimento de crianças, adolescentes e jovens adultos com paralisia cerebral (PC); e mapear áreas de foco de acordo com os componentes da Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF) da OMS. MÉTODO: Estudos longitudinais do desenvolvimento de crianças, adolescentes e/ou jovens adultos com PC foram incluídos nesta revisão de escopo. A busca por estudos elegíveis foi realizada nas bases de dados: MEDLINE, PubMed, LILACS, EMBASE, Cochrane, CINAHL, Scopus, e foi restrita aos anos de 2002-2022. Todas os desfechos dos estudos foram classificados em componentes da CIF. RESULTADOS: Nos 56 estudos incluídos, houve 19.438 participantes, envolvendo principalmente crianças, seguidas de adolescentes e, por último, jovens adultos. Todos os componentes da CIF foram investigados e muitos estudos relataram resultados em mais de um componente. O componente atividade foi o mais investigado (67,9%; n = 38 estudos), seguida da estrutura e função corporal (42,9%; n = 24 estudos). A participação (14,2%; n = 8 estudos) e os fatores ambientais (3,6%; n = 2 estudos) foram os menos estudados. Nenhum dos estudos investigou fatores pessoais como desfecho. INTERPRETAÇÃO: Esta revisão de escopo fornece uma visão geral dos estudos sobre o desenvolvimento de crianças, adolescentes e jovens adultos com PC, usando a estrutura da CIF, identificando áreas atuais de foco e lacunas. Estudos futuros devem visar a participação, os fatores contextuais e a transição para a vida adulta. O QUE ESTE ESTUDO ADICIONA: A CIF pode ser usada para mapear uma série de desfechos por meio de estudos de desenvolvimento. Os principais desfechos investigados em crianças com PC foram atividade e estrutura e função corporal. Pouco tem sido explorado os desfechos de participação e fatores contextuais ao longo do tempo. A principal classificação utilizada para estratificar os participantes foi o Sistema de Classificação da Função Motora Grossa. Estudos futuros devem ampliar seu foco para diferentes áreas da CIF, e na transição para a vida adulta.

5.
Disabil Rehabil ; 45(23): 3912-3921, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-36322490

RESUMO

PURPOSE: Measurement development is a reiterative process requiring refinements and revalidation. The purpose of this study was to examine structural validity and reliability of the Child Engagement in Daily Life Measure (Version 2) for parents of children with cerebral palsy (CP) across a broader age span. METHODS: Participants were 1054 parents of children with CP 1.5-11 years of age. Parents completed the Child Engagement in Daily Life measure that consists of the Participation in Family and Recreational Activities domain (11 items) and the Performance of Self-care Activities domain (18 items) as part of two longitudinal studies related to outcomes for children with CP. RESULTS: Rasch analysis indicated acceptable fit of items, stable item calibration, and logical ordering of items by difficulty for both frequency of participation in family and recreational activities and performance of self-care activities. Test-retest reliability was good to excellent: ICC = 0.78 for frequency of participation, ICC = 0.68 for enjoyment of participation, and ICC = 0.97 for self-care. CONCLUSIONS: Evidence supports reliability and validity of the Child Engagement in Daily Life Measure (Version 2) for parent-report of their children's participation in family and recreational activities and performance of self-care activities for children with CP 1.5-12 years of age.IMPLICATIONS FOR REHABILITATIONParticipation in family and recreational activities and performance of self-care activities of children with cerebral palsy can be assessed using the concise parent-report Child Engagement in Daily Life Measure V2.Knowledge of the continuum of difficulty of the frequency of participation in family and recreational activities and performance of self-care activities can assist practitioners in progressing service plans.Practitioners are encouraged to use the measure to guide discussions with parents and children on areas to focus services to support participation in family and recreational activities and performance of self-care activities.


Assuntos
Paralisia Cerebral , Humanos , Criança , Psicometria , Reprodutibilidade dos Testes , Autocuidado , Pais , Inquéritos e Questionários
6.
Dev Med Child Neurol ; 65(6): 745-753, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36469744

RESUMO

AIM: To identify and provide a descriptive overview of the development of children, adolescents, and young adults with cerebral palsy (CP) in longitudinal studies; and map areas of focus according to the components of the World Health Organization's International Classification of Functioning, Disability, and Health (ICF). METHOD: Longitudinal studies of the development of children, adolescents, and/or young adults with CP were included in this scoping review. A search for eligible studies was conducted in the databases MEDLINE, PubMed, LILACS, EMBASE, Cochrane, CINAHL, and Scopus, and was restricted to the years 2002 to 2022. All outcome measures of the studies were classified into ICF components. RESULTS: In the 56 studies included, there were 19 438 participants, involving mainly children, followed by adolescents, and lastly young adults. All components of the ICF were investigated and many studies reported outcomes in more than one component. Activity was the most investigated (67.9%; n = 38 studies), followed by body functions and structures (42.9%; n = 24 studies). Participation (14.2%; n = 8 studies) and environmental factors (3.6%; n = 2 studies) were the least studied. None of the studies investigated personal factors as an outcome. INTERPRETATION: This scoping review provides an overview of studies on the development of children, adolescents, and young adults with CP, using the ICF framework, identifying current areas of focus and gaps in the research. Future studies should target participation, contextual factors, and the transition into adulthood. WHAT THIS PAPER ADDS: The International Classification of Functioning, Disability, and Health can be used to map a range of outcomes through developmental studies. The main outcomes investigated in children with cerebral palsy were activity, and body functions and structures. Little has been explored in participation and contextual factors outcomes over time. The main classification used to stratify the participants was the Gross Motor Function Classification System.


Assuntos
Paralisia Cerebral , Pessoas com Deficiência , Criança , Humanos , Adolescente , Adulto Jovem , Avaliação de Resultados em Cuidados de Saúde , Bases de Dados Factuais , Avaliação da Deficiência
7.
J Clin Med ; 11(11)2022 May 29.
Artigo em Inglês | MEDLINE | ID: mdl-35683448

RESUMO

BACKGROUND: It is important to gain a better understanding of mental health issues in adolescents and young adults (AYA) with cerebral palsy (CP). In this cross-sectional study, we explore if demographics, social and clinical questionnaire scores, and cortisol levels in hair samples from AYA with CP are associated with higher scores on anxiety and/or depression questionnaires. METHODS: Data from a community-based sample of 63 AYA with CP (30 females; ages 16 to 30 (median age of 25)) were analyzed. Forty-one (65%) participants (20 females) provided a hair sample. Outcomes were assessed using bivariate linear regression analyses and hierarchical regression analyses. RESULTS: Clinical depressive and anxiety symptoms were present in 33% and 31% of participants, respectively. Family functioning, B = 9.62 (95%CI: 5.49-13.74), fatigue, B = 0.15 (95%CI: 0.05-0.25), and pain, B = 1.53 (95%CI: 0.48-2.58) were statistically significant predictors of depressive symptoms. Fatigue, B = 0.24 (95%CI: 0.12-0.35) and pain, B = 1.63 (95%CI: 0.33-2.94) were statistically significant predictors of anxiety. Cortisol levels from hair samples were not found to be associated with depressive symptoms or anxiety. CONCLUSIONS: A high prevalence of mental health problems and co-occurring physical problems was found in AYA with CP. Integrating mental support into regular care for AYA with CP is recommended.

8.
Res Involv Engagem ; 7(1): 78, 2021 Nov 06.
Artigo em Inglês | MEDLINE | ID: mdl-34742354

RESUMO

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.


More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.

9.
Pediatr Phys Ther ; 33(4): 227-235, 2021 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-34417427

RESUMO

PURPOSE: To compare the effect of solid (SAFO) and hinged (HAFO) ankle-foot orthoses in children with cerebral palsy spastic diplegia and true equinus and jump gait. METHODS: Participants were 26 children (13 wore SAFO and 13 wore HAFO) aged 4 to 14 years classified as Gross Motor Function Classification System levels I to III. Children were tested on standardized measures of body structure and function, activity, and participation. RESULTS: Children wearing HAFO reached further in standing than those wearing SAFO. Among children who walked without an assistive device, children wearing HAFO had greater stride length and faster velocity. Mean Gross Motor Function Measure and Pediatric Evaluation of Disability Inventory mobility scores did not differ between groups. The cost-to-benefit ratios showed parents preferred HAFO. CONCLUSIONS: Among children with true equinus and jump gait, the effects of HAFO were greater in children who walked without an assistive mobility device.


Assuntos
Paralisia Cerebral , Órtoses do Pé , Tornozelo , Criança , Desenho de Equipamento , Marcha , Humanos , Aparelhos Ortopédicos
11.
Phys Occup Ther Pediatr ; 41(5): 485-502, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33525933

RESUMO

Aims: Legislation, perspectives, and guidelines support the use of goals that address student participation in school. The purpose of this study was to determine if students with participation-based goals receive school-based physical therapy services differently and demonstrate better outcomes than students with non-participation-based goals.Methods: Secondary data analysis. School-based physical therapists (n = 109) provided services to students (n = 294) over 20 weeks. The physical therapists determined a primary goal for each student and classified this goal based on if it was (n = 181) or was not (n = 113) performed and measured within a school activity or routine (participation-based versus non-participation-based). The physical therapists documented the proportion of services provided within a school activity, on behalf of the student, and consisting of activity-focused functional activities. They also measured goal attainment and assessed participation via the School Function Assessment at the beginning and end of the study.Results: Students with participation-based goals received a significantly greater proportion of services within a school activity than those with non-participation-based goals (p < 0.001). There was no significant difference for the remaining service variables, nor for the outcome variables.Conclusions: Use of participation-based goals may promote school-based physical therapy service delivery within a school activity, thus supporting best practice.


Assuntos
Objetivos , Instituições Acadêmicas , Humanos , Modalidades de Fisioterapia , Serviços de Saúde Escolar , Estudantes
13.
Res Dev Disabil ; 110: 103853, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33486394

RESUMO

PURPOSE: To cross-culturally adapt the Self-Care Domain of Child Engagement in Daily Life and the Ease of Caregiving for Children to Arabic language and Saudi culture and to examine the reliability of the Arabic version of both measures. METHODS: A modified cross-cultural adaptation procedure was employed. A total 36 children with cerebral palsy (aged 1.5-11 years) and their parents participated in the pilot and final testing steps. A committee of 7 stakeholders evaluated cross-cultural equivalence of both measures. Cronbach's alpha, intra-class correlation coefficient, and minimal detectable change were used to establish internal consistency, test-retest reliability, and distribution-based index, respectively. RESULTS: Minor linguistic, not cultural, adaptations were made in the Arabic version of both measures. Conceptual, item, semantic, and operational types of equivalences were supported. The Arabic version of Self-Care Domain of Child Engagement in Daily Life and Ease of Caregiving for Children demonstrated high internal consistency (0.97 and 0.91, respectively), excellent test-retest reliability (0.99 and 0.96, respectively), and appropriate minimal detectable change values (0.29, 0.43, respectively). CONCLUSIONS: The Arabic version of Self-Care Domain of Child Engagement in Daily Life and Ease of Caregiving for Children are reliable and culturally appropriate for use with parents of children with cerebral palsy in Saudi Arabia.


Assuntos
Comparação Transcultural , Idioma , Criança , Humanos , Psicometria , Reprodutibilidade dos Testes , Arábia Saudita , Autocuidado , Inquéritos e Questionários
14.
Phys Occup Ther Pediatr ; 41(1): 18-37, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32363980

RESUMO

AIM: To create longitudinal trajectories and reference percentiles for frequency of participation in family and recreational activities for children with cerebral palsy (CP) by Gross Motor Function Classification System (GMFCS) level. METHODS: 708 children with CP 18-months to 12-years of age and their families participated in two to five assessments using the GMFCS and Child Engagement in Daily Life Measure. Data were analyzed using mixed-effects models and quantile regression. RESULTS: Longitudinal trajectories depict the relatively stable level of frequency of participation with considerable individual variability. Average change in the frequency of participation scores of children from 2-12 years of age by GMFCS level varied from 3.7 (GMFCS level I) to - 9.0 points (GMFCS level V). A system to interpret the magnitude of change in percentiles over time is presented. CONCLUSIONS: Longitudinal trajectories and reference percentiles can inform therapists and families for collaboratively designing services and monitoring performance to support children's participation in family and recreational activities.


Assuntos
Paralisia Cerebral/classificação , Paralisia Cerebral/fisiopatologia , Destreza Motora/classificação , Recreação , Criança , Pré-Escolar , Estudos de Coortes , Crianças com Deficiência/reabilitação , Família , Feminino , Humanos , Lactente , Masculino , Estudos Prospectivos , Índice de Gravidade de Doença
16.
BMC Pediatr ; 20(1): 393, 2020 08 20.
Artigo em Inglês | MEDLINE | ID: mdl-32819318

RESUMO

BACKGROUND: Gross motor development curves for children with Cerebral Palsy (CP), grouped by Gross Motor Function Classification System (GMFCS) levels, help health care professionals and parents to understand children's motor function prognosis. Although these curves are widely used in Brazil to guide clinical decision-making, they were developed with Canadian children with CP. Little is known about how these patterns evolve in children and adolescents with CP in low-income countries like Brazil. The PARTICIPA BRAZIL aims to: (i) to identify and draw a profile of functioning and disability of Brazilian children and adolescents with CP by classifying them, for descriptive purposes, with all five valid and reliable functional classifications systems (gross motor function, manual ability, communication function, visual and eating and drinking abilities); (ii) to create longitudinal trajectories capturing the mobility capacity of Brazilian children and adolescents with CP for each level of the GMFCS; (iii) to document longitudinal trajectories in the performance of activities and participation of Brazilian children and adolescents with CP across two functional classification systems: GMFCS and MACS (Manual Abilities Classification System); (iv) to document longitudinal trajectories of neuromusculoskeletal and movement-related functions and exercise tolerance functions of Brazilian children and adolescents with CP for each level of the GMFCS; and (v) to explore interrelationships among all ICF framework components and the five functional classification systems in Brazilian children and adolescents with CP. METHODS: We propose a multi-center, longitudinal, prospective cohort study with 750 Brazilian children and adolescents with CP from across the country. Participants will be classified according to five functional classification systems. Contextual factors, activity and participation, and body functions will be evaluated longitudinally and prospectively for four years. Nonlinear mixed-effects models for each of the five GMFCS and MACS levels will be created using test scores over time to create prognosis curves. To explore the interrelationships among ICF components, a multiple linear regression will be performed. DISCUSSION: The findings from this study will describe the level and nature of activities and levels of participation of children and youth with CP in Brazil. This will support evidence-based public policies to improve care to this population from childhood to adulthood, based on their prognosis.


Assuntos
Paralisia Cerebral , Adolescente , Brasil , Canadá , Criança , Humanos , Destreza Motora , Estudos Prospectivos , Índice de Gravidade de Doença , Adulto Jovem
17.
Disabil Rehabil ; 42(14): 2002-2011, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-30621464

RESUMO

Purposes: First, to describe how young adults with cerebral palsy (CP) experience lifecourse health development, and second, to create key messages for pediatric health service providers to promote children's capacities for future adult roles and healthy adult living.Methods: Interpretive description qualitative design. Participants were a purposive sample of 23 young adults with CP, 25-33 years of age, who varied in functional abilities, education, living, and work situations. Three experienced interviewers conducted 50-60 min interviews. Transcripts were analyzed to identify themes. Subsequently, a one-day meeting was held with an advisory group to inform our interpretive description of key messages.Results: Four themes emerged from the interviews: personal lifecourse, contexts for healthy living, health development through everyday experiences, and healthy living as an adaptive process. Key messages for service providers are: (a) address healthy living across the lifecourse, (b) focus on contexts of healthy living, (c) focus on everyday experiences and experiential learning, and (d) pay attention to the timing of opportunities and experiences.Conclusion: The findings provide first steps toward adoption of an approach to lifecourse health development for individuals with CP that emphasizes physical, mental, and emotional wellbeing and goals for desired social participation over the lifecourse.Implications for rehabilitationYoung adults with cerebral palsy experience lifecourse health development as a personal ongoing and dynamic process occurring in many contexts.Individuals with cerebral palsy continually adjust to changing contexts (adaptive process).Everyday experiences and experiential learning enable individuals with cerebral palsy to develop capacities for current and future healthy living including social participation."Timing" of opportunities and experiences is important for health development.


Assuntos
Atividades Cotidianas , Envelhecimento/psicologia , Paralisia Cerebral/psicologia , Pessoas com Deficiência/psicologia , Identificação Social , Participação Social , Adulto , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/reabilitação , Feminino , Estilo de Vida Saudável , Humanos , Entrevistas como Assunto , Masculino , Saúde Mental , Avaliação das Necessidades , Pesquisa Qualitativa , Estigma Social , Apoio Social , Transição para Assistência do Adulto
18.
Dev Neurorehabil ; 23(3): 166-175, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31107128

RESUMO

Purpose: To re-validate stability and hierarchal ordering of items, test-retest reliability, and construct validity of the Ease of Caregiving for Children measure for parents of children with cerebral palsy (CP) up to 11 years of age.Methods: Participants were 613 parents of children with CP between 1.5 and 11 years of age. Parents completed Ease of Caregiving for Children and both parents and therapists classified children's levels of gross motor, manual and communication functions.Results: Rasch analysis indicated acceptable fit of items, stable item calibration, and logical ordering of items by difficulty. Test-retest reliability was good: ICC = 0.69 (95% CI 0.52-0.81). For construct validity, ease of caregiving was higher for parents of children with higher functioning compared to parents of children with lower functioning, p < .001.Conclusions: Ease of Caregiving for Children is a unidimensional, reliable and valid measure of physical caregiving for parents of children with CP 1.5-11 years.


Assuntos
Cuidadores/psicologia , Paralisia Cerebral/patologia , Reabilitação Neurológica/psicologia , Paralisia Cerebral/classificação , Paralisia Cerebral/psicologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Psicometria/métodos , Psicometria/normas , Reprodutibilidade dos Testes
19.
Disabil Rehabil ; 42(25): 3591-3605, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-31084228

RESUMO

Purpose: Development of individualized student goals is integral to special education. Although United States federal legislation and state, local, and professional guidelines outline preferred goal development processes, actual practice does not always reflect ideal practice. The purposes of this research were to understand how physical therapists develop student goals and to identify facilitators and barriers to development of participation-based goals.Methods: Twenty school-based physical therapists participated in one of five semi-structured focus groups. Two researchers conducted thematic analysis of transcriptions of audio recordings to identify qualitative themes; a third researcher reviewed the analysis.Results: Five themes emerged related to therapists' recommendations for goal development: (1) Understand the student: The foundation for individualized goal development, (2) Teaming: The critical component to integrate varied perceptions and establish a common vision, (3) Relevant focus of goal: Addressing what is meaningful for a student's day, (4) Best practices: Embracing professional advances, and (5) Develop and write the goal: The art and science of writing goals. The first four themes also reflected facilitators and barriers to development of participation-based goals.Conclusions: Therapists' comments reflected striving to follow ideal practice recommendations despite identified challenges. This research helps educational teams understand and reflect on goal development processes.Implications for rehabilitationAlthough writing goals is a foundational task in school-based practice, meaningful goal development is a complex process.School-based physical therapists recommend working closely with students, parents, teachers, and other members of the educational team to establish good communication, trust, and a shared philosophy of collaboration and responsibility for student goalsA thorough understanding of the student serves as the foundation for developing individualized student goals.Educational teams are encouraged to understand professional, federal, state, and local guidelines and embrace professional advances in goal development practices.


Assuntos
Objetivos , Fisioterapeutas , Humanos , Percepção , Instituições Acadêmicas , Estudantes
20.
Phys Occup Ther Pediatr ; 40(1): 93-105, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31288611

RESUMO

Aims: To determine changes in physical caregiving for parents of children with cerebral palsy (CP) over a two-year period based on children's gross motor function level and age.Methods: 153 parents of children with CP rated their physical caregiving using the Ease of Caregiving for Children three times over two years. Parents and assessors classified children's gross motor function using the Gross Motor Function Classification System (GMFCS). Physical caregiving was compared at three test times among parents of children grouped by GMFCS level (I, II-III, and IV-V) and age (1.7-5.9 and 6-11 years) using a three-way mixed ANOVA.Results: Among all analyses, a two-way interaction was found between children's GMFCS level and test time on ease of caregiving, p < 0.01. Change over two-year period was found for parents of children in level I and II-III, p < 0.01, but not parents of children in levels IV-V. At each test time, parents of children in level I reported the greatest ease of caregiving followed by parents of children in levels II-III, and levels IV-V, who reported the lowest ease of caregiving, p < 0.001.Conclusions: Findings support evaluation and monitoring of physical caregiving for parents of children with CP over time.


Assuntos
Cuidadores , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/reabilitação , Crianças com Deficiência/reabilitação , Pais , Atividades Cotidianas , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Estudos Longitudinais , Masculino , Inquéritos e Questionários
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