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1.
Child Care Health Dev ; 50(2): e13254, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38517156

RESUMO

BACKGROUND: Translating knowledge to improve paediatric rehabilitation has become a research area of interest. This study describes the development and evaluation of an online conference that brought together perspectives of individuals with cerebral palsy (CP), families, health care professionals, and researchers to discuss the daily living of individuals with CP. METHODS: We anchored the development and implementation of the online conference in the action cycle of the Knowledge to Action Framework. To develop the meeting, we included representatives from each stakeholder group in the programme committee. The conference programme was designed having the lifespan perspective of individuals with CP, from birth to adulthood, as its central core, with themes related to daily living (e.g., self-care, mobility, and continuing education). Participants' satisfaction with the conference was assessed using an anonymized online survey sent to all participants. RESULTS: The conference had 1656 attendees, of whom 675 answered the online satisfaction survey. Most participants rated the structure of the conference (i.e., quality of the technical support, audio and video, and online platform) and discussed topics (i.e., relevance, content, discussion, speakers, and available time) positively. CONCLUSION: Collaborative conferences that include stakeholders throughout the planning and implementation are a viable, effective knowledge translation strategy that allows for sharing experiences and disseminating knowledge among families and individuals with CP, health care professionals, and researchers.


Assuntos
Paralisia Cerebral , Criança , Humanos , Paralisia Cerebral/reabilitação , Pessoal de Saúde , Autocuidado , Educação Continuada
2.
Braz J Phys Ther ; 27(6): 100561, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37979248

RESUMO

BACKGROUND: Individuals with unilateral spastic cerebral palsy (USCP) often show difficulties using their hands during activities of daily living. OBJECTIVE: To investigate the factors that interfere with hand use during bimanual activities in children and adolescents with USCP. METHODS: We conducted a cross-sectional study with 102 children and adolescents with USCP, aged 6 to 18 years. We collected information with the caregivers about the classification of the child's manual ability, according to the Manual Ability Classification System (MACS); child's age; side of the involvement; Children's Hand-Use Experience Questionnaire- CHEQ2.0. Cluster analysis identified groups of children and adolescents who performed CHEQ activities with or without assistance. Multiple linear regression analyses identified the contribution of the factors: age, sex, MACS level, side of hemiparesis, and clusters of assistance, on the outcomes of efficacy, time, and feeling bothered. RESULTS: MACS and clusters of assistance explained the variance in efficacy (p<0.05; R2=0.31) and time (p<0.05; R2=0.37). MACS explained 22% of the variance in feeling bothered.  Children and adolescents with increased difficulty to perform activities that involve hand use (i.e., MACS III) and who receive assistance during most bimanual activities showed less efficacy of use, were slower in their performance, and presented greater feeling of being bothered. CONCLUSION: Assistance in bimanual activities and MACS level contributed to explain the efficacy of use, time, and feeling bothered in performing bimanual activities. Intervention strategies aimed at promoting the performance of bimanual activities in the daily routine of children with USCP should consider these outcomes.


Assuntos
Paralisia Cerebral , Criança , Humanos , Adolescente , Atividades Cotidianas , Estudos Transversais , Mãos , Extremidade Superior
3.
Arch Phys Med Rehabil ; 104(8): 1227-1235, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36708858

RESUMO

OBJECTIVE: To explore whether self-determination and family socioeconomic status (SES) mediate and/or moderate the relationship between mobility and community participation of adolescents and young adults with cerebral palsy (CP). DESIGN: Survey. SETTING: Online platform. PARTICIPANTS: Of 55 eligible adolescents/young adults with CP, 50 agreed to participate and 2 were excluded. The final convenience sample included 48 individuals (N=48), aged 15-32 years, levels I-IV of the Gross Motor Function Classification System and I-II of the Communication Function Classification System. MAIN OUTCOME MEASURES: The Temple University Community Participation Measure documented the amount, breadth, and insufficiency/sufficiency ratios of participation across 26 community settings. The ARC Self-determination Scale and the Mobility Scale of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) measured individuals' self-determination (ie, autonomy, psychological empowerment, self-realization) and mobility skills, respectively. The Brazilian Economic Classification Criteria-2021 assessed family SES. RESULTS: Analyses of mediating/moderating effects revealed that the influence of individuals' mobility skills on their breadth of community participation was mediated by autonomy. Family SES moderated the indirect effect of mobility on community participation breadth through autonomy. When the model was adjusted for participants' age, individuals with higher SES reported greater breadth in community participation than those from moderate and lower SES for all mobility levels. However, the magnitude of the differences among individuals of different SES levels diminished as mobility increased. CONCLUSIONS: The mobility skills of youths with CP influence their community participation through autonomy. To foster greater engagement of these individuals in the community, rehabilitation professionals should focus not only on improvement of mobility skills but also on the promotion of self-determined behaviors, especially autonomy.


Assuntos
Paralisia Cerebral , Humanos , Participação da Comunidade , Fatores Socioeconômicos , Avaliação da Deficiência , Inquéritos e Questionários
4.
Child Care Health Dev ; 49(5): 870-878, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-36597412

RESUMO

BACKGROUND: Recently, there has been an increase in the development of transition services for adolescents with cerebral palsy (CP). Studies have emphasized the importance of addressing parents' needs during their children's adolescence. AIMS: This study aimed to understand how parents experience the adolescence and transition to adulthood of their adolescents with CP and to identify relevant components for the development of a service for families. METHODS AND PROCEDURES: A qualitative study was conducted with 18 families of adolescents with CP. Caregivers were purposely recruited from a transition programme called Adolescence in Focus Program. Individual interviews were conducted using a semistructured script. Then, the caregivers were invited to participate in focus groups. The interviews and focus groups were recorded and transcribed for content analysis. RESULTS: Three categories emerged: 'The onset of adolescence', 'What will our future be?' and 'Support and services: paths to follow'. The adolescents' behavioural changes seemed to be intensified by their restricted social participation. Parents reported the desire for their adolescents to become independent in daily activities. Regarding their own future, they aimed to re-establish the occupational roles that were interrupted. CONCLUSION: Information from this study guided the design of a programme for families regarding content, format and outcomes.


Assuntos
Paralisia Cerebral , Criança , Humanos , Adolescente , Paralisia Cerebral/terapia , Pesquisa Qualitativa , Grupos Focais , Cuidadores , Pais
5.
Dev Med Child Neurol ; 65(3): e1-e8, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35903015

RESUMO

OBJETIVO: Examinar a relação entre o uso da mão de assistência em atividades bimanuais e o desempenho de crianças nas atividades e tarefas de autocuidado. MÉTODO: Analisamos retrospectivamente dados da funcionalidade diária (Inventário de Avaliação Pediátrica de Incapacidade [PEDI]) e do desempenho bimanual (Avaliação da Mão de Assistência [AHA]) de 112 crianças (idade média: 8 anos 10 meses [DP 2 anos 1 mês], amplitude 3 anos 7 meses-17 anos 4 meses; 66 meninos, 46 meninas) com paralisia cerebral (PC) unilateral espástica. Nós usamos análise Rasch para examinar a relação entre os escores individuais nos itens do AHA e nos itens de autocuidado (habilidades funcionais e assistência do cuidador) do PEDI. RESULTADOS: A maioria das habilidades funcionais e das tarefas de assistência do cuidador de autocuidado ficaram localizadas no meio do contínuo unidimensional. Estes itens apresentaram níveis de dificuldade semelhantes aos itens do AHA relacionados à coordenação efetiva das duas mãos, cadência, e uso da mão de assistência para estabilizar e soltar objetos, bem como variações nos movimentos dos braços. INTERPRETAÇÃO: A distribuição dos itens de autocuidado do PEDI e itens do AHA ao longo do contínuo unidimensional ilustra a relação entre o uso da mão de assistência e o desempenho bimanual em autocuidado. Interpretação sobre a localização dos itens na hierarquia do contínuo unidimensional pode ajudar no raciocínio clínico dos terapeutas e na sugestão de objetivos de intervenção para melhorar a função manual e a funcionalidade diária de crianças com PC unilateral espástica. Tais aplicações necessitam de investigação futura.

6.
Dev Med Child Neurol ; 65(3): 385-392, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-35866562

RESUMO

AIM: To examine the relationship between assisting hand use in bimanual activities and children's self-care activities and task performance. METHOD: We retrospectively analysed daily functioning (Pediatric Evaluation of Disability Inventory [PEDI]) and bimanual performance (Assisting Hand Assessment [AHA]) data from the assessment of 112 children (mean age: 8 years 10 months [SD 2 years 1 month], range 3 years 7 months-17 years 4 months; 66 males, 46 females) with unilateral spastic cerebral palsy (CP). We used Rasch analysis to examine the relationship between individual item scores from the AHA and the self-care items (functional skills, caregiver assistance) from the PEDI. RESULTS: Most self-care functional skills and caregiver-assisted tasks were located on the middle of the unidimensional continuum. These items showed similar levels of difficulty as the items from the AHA related to the effective coordination of two hands, appropriate pace, and use of the assisting hand to stabilize and release objects, as well as variations in arm movements. INTERPRETATION: The distribution of the PEDI self-care and AHA items along the unidimensional continuum illustrates the relationship between assisting hand use and self-care bimanual performance. Interpretation of the items' locations on the hierarchical unidimensional continuum may be helpful to therapists' clinical reasoning and suggest intervention goals to improve the hand function and daily functioning of children with unilateral spastic CP. Such an application needs further investigation.


Assuntos
Paralisia Cerebral , Masculino , Feminino , Criança , Humanos , Lactente , Estudos Retrospectivos , Autocuidado , Destreza Motora , Mãos
7.
Child Care Health Dev ; 48(5): 833-841, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35229345

RESUMO

BACKGROUND: The development and implementation of transition services for adolescents with disabilities should incorporate perceptions of their needs and interests. The aim of the study was to understand the concerns of adolescents with physical disabilities during adolescence and their expectations regarding adulthood to help plan a transition programme in Brazil. METHODS: This is a qualitative study, using a phenomenological approach. Eight adolescents with physical disabilities (seven with cerebral palsy, one with muscular dystrophy), aged between 15 and 17 years, participated in two focus groups. Prior to the conduction of the groups, clinicians selected topics related to adolescence and the transition to adulthood, based on their professional experience and available literature. During the focus groups, illustrative images of each topic were presented to the participants. Each adolescent was asked to select five topics that he/she considered important to be discussed in a future transition programme. The participants justified their individual choices and, in groups, reached a consensus on the groups' priorities. This strategy was chosen to motivate the discussion among the participants and to explore their concerns regarding adolescence and transition to adulthood. The focus groups were audio recorded and transcribed for content analysis. RESULTS: Three themes emerged from the content analysis: (1) "Adolescents and their social relationships," (2) "Identity formation: self-awareness and development of autonomy," and (3) "What about adulthood?" CONCLUSION: The themes revealed conflicts between the adolescents' desire to achieve independence and autonomy and the awareness of their limitations. The interpretation of the results helped structuring the actions of the Adolescence in Focus Programme, with two main actions: promotion of the adolescent's functional performance in daily living activities and assistance with their identity formation and preparation for adulthood.


Assuntos
Paralisia Cerebral , Pessoas com Deficiência , Adolescente , Adulto , Feminino , Grupos Focais , Humanos , Relações Interpessoais , Pesquisa Qualitativa
8.
Phys Occup Ther Pediatr ; 41(6): 601-619, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33653225

RESUMO

AIM: To investigate the feasibility and the preliminary effects of an individualized intensive goal training for adolescents with cerebral palsy (CP). METHODS: Twelve adolescents with CP (12-17 years old, MACS II-III, GMFCS I-IV) identified functional goals to be practiced three hours/day, five days/week, for two weeks. The feasibility aspects included the participant's adherence (i.e., daily logs), the adequacy of the instruments used, and the participant's satisfaction with the intervention (i.e., structured questionnaire). Outcome measures included the Canadian Occupational Performance Measure (COPM), Pediatric Evaluation of Disability Inventory (PEDI) (self-care; mobility), Children Helping Out: Responsibilities, Expectations and Supports (CHORES), Participation and Environment Measure-Children and Youth (PEM-CY) (home) and Box and Blocks Test (BBT). Assessments were conducted one month and two days before the intervention, immediately and three months after the intervention. Friedman tests were used to test time-related differences in the outcome measures. RESULTS: All adolescents completed and reported satisfaction with the proposed intervention. Significant improvements were observed in performance and satisfaction (COPM), in functional skills and caregiver assistance in self-care and in the performance of household tasks. There were no significant differences in mobility skills, independence in mobility or household tasks, home participation, or manual dexterity. CONCLUSION: The intensive training was feasible and promoted improvements in functional goals and daily functioning of adolescents with CP.


Assuntos
Paralisia Cerebral , Atividades Cotidianas , Adolescente , Canadá , Criança , Estudos de Viabilidade , Objetivos , Humanos , Motivação
9.
Front Rehabil Sci ; 2: 709983, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-36188792

RESUMO

Knowledge translation (KT) is gaining attention in the pediatric rehabilitation field. Nossa Casa Institute is the first organization in Brazil aiming to foster cerebral palsy (CP) awareness and empower families by discussing reliable information. This study aims to build a network where individuals with CP and their families, researchers, health care professionals, and services can communicate and share experiences. In this article, we describe the experience of planning and conducting an educational and interactive online workshop to foster principles of family-centered service (FCS). We used the action cycle from the Knowledge to Action (KTA) framework to describe and ground the proposed activities. In Module 1, "Challenges and barriers to incorporate family-centered principles," we discussed the historical perspective, main principles, and challenges related to FCS implementation. Module 2, "What is my contribution to the family-centered service?" was aimed to foster strategies to improve the implementation of principles of FCS in the care of children with disabilities. In Module 3, "What can we do together?" the groups presented their ideas and suggestions. This interactive and educational workshop was an opportunity for Nossa Casa Institute to disseminate accessible and reliable information regarding FCS and to empower families to participate actively in the rehabilitation process and advocate for the best provision of care for their children. Future actions of Nossa Casa Institute include the coordination of a national conference to connect families, individuals with CP, healthcare and rehabilitation professionals, and researchers. There is also a need, and opportunity, for formal evaluation of these KT activities.

10.
Dev Med Child Neurol ; 62(11): 1274-1282, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32686119

RESUMO

AIM: To examine the efficacy of Hand-Arm Bimanual Intensive Therapy (HABIT) on daily functioning, unimanual dexterity, and bimanual performance of children with bilateral cerebral palsy (CP) compared with customary care. METHOD: Forty-one children with bilateral CP, aged 4 to 16 years, classified in levels I to III of the Manual Ability Classification System, were randomly assigned to HABIT (90h) (n=21) or to customary care (4.5h) (n=20). Participants' daily functioning (Pediatric Evaluation of Disability Inventory [PEDI], Canadian Occupational Performance Measure [COPM]), unimanual dexterity (Jebsen-Taylor Test of Hand Function, Box and Blocks Test [BBT]), and bimanual performance (Both Hands Assessment) were assessed pre-, post-, and 6 months after the intervention. Linear mixed-effects models were used for inferential analysis. RESULTS: Children participating in HABIT showed greater improvements in daily functioning (COPMperformance : χ 1 2 =9.50, p<0.01; COPMsatisfaction : χ 1 2 =5.07, p<0.05; PEDIfunctional skills : χ 1 2 =6.81, p<0.01; PEDIcaregiver assistance : χ 1 2 =6.23, p<0.05) and in the dexterity of the dominant hand (BBT: χ 1 2 =3.99, p<0.05) compared with children maintaining customary care. Group or time effects did not explain any variance in bimanual performance or in the dexterity of the non-dominant hand. INTERPRETATION: HABIT may be beneficial for children with bilateral CP, with benefits evidenced for daily functioning outcomes. WHAT THIS PAPER ADDS: Hand-Arm Bimanual Intensive Therapy (HABIT) improved daily functioning of children with bilateral cerebral palsy (CP). Bimanual performance, measured by the Both Hands Assessment, did not change after HABIT in children with bilateral CP. Children with asymmetric and symmetric hand use exhibited similar improvements after HABIT.


Assuntos
Atividades Cotidianas , Braço/fisiopatologia , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/reabilitação , Lateralidade Funcional/fisiologia , Mãos/fisiopatologia , Destreza Motora/fisiologia , Terapia Ocupacional/métodos , Avaliação de Resultados em Cuidados de Saúde , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Estudos Prospectivos , Método Simples-Cego
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