Individualized telehealth home programme for children with cerebral palsy during the COVID-19 pandemic.

AIM: To analyse the effects of an individualized telehealth home programme on the performance of functional goals of children and adolescents with cerebral palsy (CP) during the COVID-19 pandemic. METHOD: A prospective single-group intervention study with children/adolescents with CP (n = 144; median age = 92 months [Q1 = 44.0, Q3 = 148.8]; 74 males, 70 females), representing all Gross Motor Function Classification System (GMFCS) levels participated in a 4-month home programme in Brazil. An interdisciplinary team encouraged families to choose a functional goal to be trained. The Canadian Occupational Performance Measure (COPM) was used at pre-intervention (T1), post-intervention (T2), and 3-month follow-up (T3). The differences in COPM scores at T1, T2, and T3 were evaluated using Friedman's test. The effect size was calculated using Cohen's d. Univariate analysis was included. RESULTS: Significant improvements were observed after the intervention, with maintenance of scores after 3 months (p < 0.001, dperformance = 1.33; dsatisfaction = 1.31). None of the tested variables (child's abilities, age, caregiver's educational level, perception of family-centredness, and type of goal) were significantly related to the change scores. INTERPRETATION: The individualized remote telehealth home programme can be a potential intervention, especially for children with CP classified in GMFCS levels IV and V. Also, this intervention provided a possible solution to help some children and their families in performing prioritized functional goals during the pandemic period.

"From All, To All": Implementing a collaborative online conference to reflect on the daily living of individuals with cerebral palsy.

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.

Bimanual Coordination in Children with Bilateral Cerebral Palsy: A Cross-Sectional Study.

AIM: To compare bimanual coordination in children with bilateral cerebral palsy (BCP) with that of children with typical development (TD) and correlate bimanual coordination with clinical measures of hand function. METHODS: 3-D kinematic data were collected from 14 children with BCP (mean age 13 years 1 month; range 7.3-17.2 years, 5 females) and 14 age-matched children with TD (mean age 13 years 1 month, range 7.0-16.0 years, 7 females) as they opened a drawer with one hand and activated a switch inside it with the other hand at self-paced and as-fast-as-possible speeds. Hand roles varied in each condition. Participants' hand function levels were classified using the Manual Ability Classification System. Unimanual dexterity and bimanual performance were evaluated using the Box and Blocks Test and Both Hands Assessment respectively. RESULTS: Participants with BCP performed the bimanual task more slowly (p < 0.001) and sequentially, as evidenced by greater time differences between the two hands achieving the end goal (p = 0.01). Faster speeds, particularly when the less affected hand opened the drawer, facilitated time-related measures of bimanual coordination (p < 0.05). Bimanual coordination correlated with all clinical measures of hand function (p < 0.05). CONCLUSION: For children with BCP, speed and hand used for each subcomponent of the task influence bimanual coordination. Better bimanual coordination is associated with less impairment of both hands.

Assisting hand use and self-care bimanual performance of children with unilateral spastic cerebral palsy.

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.

Is Mobility Sufficient to Understand Community Participation of Adolescents and Young Adults With Cerebral Palsy? The Mediating and Moderating Roles of Contextual Factors.

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.

'Thinking about myself?' Experiences of parents of adolescents with cerebral palsy: A qualitative study to guide the implementation of a service for families.

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.

"Listen to us!" A qualitative study of adolescents with disabilities to help plan a transition service.

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.

"Help Me to Improve my Own Priorities!": A Feasibility Study of an Individualized Intensive Goal Training for Adolescents with Cerebral Palsy.

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.

Intensive Bimanual Intervention for Children Who Have Undergone Hemispherectomy: A Pilot Study.

PURPOSE: To conduct a pilot study to assess the feasibility and effectiveness of an intensive bimanual intervention on upper limb function in children who have undergone hemispherectomy. METHODS: Thirteen children received 90 hours of intensive bimanual training (Hand-Arm Bimanual Intensive Therapy, HABIT). The Jebsen-Taylor Test of Hand Function (JTTHF), Box and Block Test (BBT), Assisting Hand Assessment (AHA), ABILHAND-Kids, and Canadian Occupational Performance Measure (COPM) were assessed by a masked clinician twice before, immediately, and 6 months after treatment. RESULTS: Significant improvements over time were found in the JTTHF, AHA, ABILHAND-Kids, and COPM. CONCLUSION: Completion of HABIT was feasible for children with hemispherectomy. Improvement of bimanual function and functional goals can be related to the nature of the activities prioritized in HABIT training.

Hand-arm bimanual intensive therapy and daily functioning of children with bilateral cerebral palsy: a randomized controlled trial.

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.

Programa domiciliar individualizado via telessaúde para crianças com paralisia cerebral durante a pandemia de COVID-19.

OBJETIVO: Analisar os efeitos de um programa domiciliar individualizado via telessaúde no desempenho de objetivos funcionais de crianças e adolescentes com paralisia cerebral (PC) durante a pandemia de COVID­19. MÉTODO: Um estudo de intervenção prospectivo de único grupo com crianças/adolescentes com PC (n = 144; idade mediana = 92 meses [Q1 = 44.0, Q3 = 148.8]; 74 meninos, 70 meninas), representando todos os níveis do Sistema de Classificação da Função Motora Grossa (GMFCS), participaram de um programa domiciliar de 4 meses no Brasil. Equipes interdisciplinares encorajaram famílias a escolher um objetivo funcional a ser treinado. A Medida Canadense de Desempenho Ocupacional (COPM) foi usada no período pré­intervenção (T1), pós­intervenção (T2) e 3 meses de follow­up (T3). As diferenças nos escores da COPM em T1, T2 e T3 foram avaliadas usando o teste de Friedman. O tamanho de efeito foi calculado usando o teste d de Cohen. Análise univariada foi incluída. RESULTADO: Melhoras significativas foram observadas após a intervenção, com manutenção dos escores após 3 meses (p < 0.001; ddesempenho = 1.33; dsatisfação = 1.31). Nenhuma das variáveis testadas (habilidades das crianças, idade, nível educacional do cuidador, percepção de centrado na família e tipo de objetivo) foram significativamente relacionados às mudanças nos escores. INTERPRETAÇÃO: O programa domiciliar individualizado via telessaúde pode ser uma intervenção potencial, especialmente para crianças classificadas nos níveis IV e V do GMFCS. Além disso, essa intervenção forneceu uma possível solução para ajudar crianças e suas famílias no desempenho de objetivos funcionais prioritários durante o período de pandemia.

Uso da mão de assistência e o desempenho bimanual no autocuidado de crianças com paralisia cerebral unilateral espástica.

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.

Does Dosage Matter? A Pilot Study of Hand-Arm Bimanual Intensive Training (HABIT) Dose and Dosing Schedule in Children with Unilateral Cerebral Palsy.

AIM: We compared the efficacy of hand-arm bimanual intensive training (HABIT) in two doses (90 vs. 45 hours) and two schedules of the same dose (90 vs. 2 × 45 hours) on hand and daily functioning. METHOD: Eighteen children with unilateral cerebral palsy were randomized to receive 6 hours of daily training over 3 weeks, totaling 90 hours (Group 90, n = 9) or receive 6 hours of daily training over 1.5 weeks, totaling 45 hours (Group 2 × 45, n = 9). After 6 months, Group 2 × 45 received an additional 45 hours. Hand (Jebsen-Taylor Test of Hand Function, Assisting Hand Assessment) and daily functioning tests (Canadian Occupational Performance Measure, Pediatric Evaluation of Disability Inventory) were administered before, immediately after, and 6 months after interventions. RESULTS: Both groups demonstrated significant improvements in hand and daily functioning after 90 hours (Group 90) or the first 45 hours (Group 2 × 45), without differences between groups. However, more children from Group 90 obtained smallest detectable differences in the Assisting Hand Assessment. The addition of the second bout of 45 hours (Group 2 × 45) did not lead to further improvements. CONCLUSIONS: As this study was powered to test for large differences between groups, future investigations on larger samples will be needed to compare differences at the two dosage levels.

Factors Associated With Activity Limitations in People With Rheumatoid Arthritis.

OBJECTIVE: We evaluated factors contributing to activity limitations in people with rheumatoid arthritis (RA) according to the International Classification of Functioning, Disability and Health model. METHOD: In a cross-sectional study, we measured five activity constructs in 81 people with RA. RESULTS: Multiple regression analysis revealed the following results for the five constructs: (1) RA Activities (R² = .512) included handgrip strength, range of motion deficit, deformity, and mental health; (2) Upper-Limb Activities (R² = .473) included time since diagnosis, dexterity, handgrip strength, and range of motion deficit; (3) Timed Activities (R² = .320) included dexterity and work activities; (4) Physical Autonomy Activities (R² = .562) included range of motion deficit, vitality, pain, and functional classification; and (5) Physical Conditions for Activities (R² = .416) included functional classification and vitality. CONCLUSION: Factors most associated with activity limitations were handgrip strength and hand range of motion deficits. Activity limitations in people with RA are multifactorial.

Building independence in self-care and household tasks: a qualitative study with adolescents with cerebral palsy and their caregivers.

PURPOSE: Adolescents with cerebral palsy (CP) may experience limitations in self-care and household tasks. The aim of the study was to understand the process of building independence in self-care and household tasks from the perspective of adolescents and their caregivers. MATERIALS AND METHODS: We conducted a qualitative study with a phenomenological approach with 10 adolescents (15-17 years old) and 11 caregivers from a transition service in Brazil. Semistructured, remote interviews were conducted with each participant. The interviews were recorded for transcription and content analysis. RESULTS: Two thematic categories emerged: (1) "Thinking about independence" and (2) "Possible ways to foster independence." The first category was divided into three subcategories: "Expectations and the desire to be independent," "Obstacles to independence," "Concerns about the future." The second category was divided into four subcategories: "People and places," "Opportunities for practice," "Personal attitude" and "Adaptations that facilitate." CONCLUSION: Adolescents' independence in several everyday activities involves physical, socioemotional and environmental aspects. Enabling opportunities for practice, an adapted environment, support from rehabilitation services and developing collaborative relationships with caregivers are elements that may favor the independence of adolescents with CP.

The relationship between adolescents and their caregivers is important in building independence.Interventions centered on educational practices for caregivers of adolescents with cerebral palsy should be encouraged.Environmental facilitators include support from families, friends and therapists.Collaborations among therapists, caregivers and adolescents may promote autonomy.

Bimanual hand use in children and adolescents with unilateral spastic cerebral palsy: an exploratory study.

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.

Corpus Callosum Integrity Relates to Improvement of Upper-Extremity Function Following Intensive Rehabilitation in Children With Unilateral Spastic Cerebral Palsy.

BACKGROUND: The corpus callosum (CC) plays an important role in upper extremity (UE) function. The impact on UE function in children with unilateral spastic cerebral palsy (USCP) and improvements following intensive interventions remain unknown. OBJECTIVES: To examine the (1) relationship between UE function and CC integrity and (2) relationship between CC integrity and changes in UE function following intensive interventions. METHODS: We retrospectively analyzed clinical and neuroimaging data from a sample of convenience of 44 participants (age 9.40 ± 3.10 years) from 2 larger trials. Participants received 90 hours of Hand-Arm Bimanual Intensive Therapy (HABIT) or Constraint-Induced Movement Therapy (CIMT). Unimanual dexterity (Jebsen-Taylor Test of Hand Function [JTTHF]) and bimanual performance (Assisting Hand Assessment [AHA]) were assessed preintervention and postintervention. CC tractography was reconstructed with diffusion tensor imaging (DTI) and segmented into 3 regions (genu, midbody, splenium). Pearson correlations and regression were used to assess the relationship between outcomes and DTI parameters (ie, fractional anisotropy [FA], number of streamlines, and mean, radial, and axial diffusivity). RESULTS: Both groups improved in bimanual performance (P < .01). The CIMT group improved in unimanual dexterity (P < .01). Baseline unimanual dexterity and bimanual performance correlated with FA and number of streamlines for most CC regions (P < .05). Following CIMT, pre-post changes in JTTHF were negatively correlated with axial and radial diffusivity of the CC, and AHA with splenium and number of streamlines for the CC, midbody, and splenium (all P < .05). Following HABIT, midbody FA was positively correlated with pre-post AHA changes (r = 0.417; P = .042). CONCLUSIONS: CC integrity is important for UE function in children with USCP.

Information and Empowerment of Families of Children With Cerebral Palsy in Brazil: The Knowledge Translation Role of Nossa Casa Institute.

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.

Structured skill practice during intensive bimanual training leads to better trunk and arm control than unstructured practice in children with unilateral spastic cerebral palsy.

BACKGROUND: Recently, intensive practice showed good efficacy in improving upper extremity function for children with unilateral spastic cerebral palsy (USCP). However, little is known about the significance of skill progression frequently used during intensive practice. AIMS: We evaluate the importance of skill progression during intensive bimanual practice on movement coordination. METHODS AND PROCEDURES: Twenty children with USCP (average age: 8.5; MACS levels: I-III) participated in the study. Ten children were randomly allocated to a structured practice group (SPG) with skill progression, and the other 10 children randomized to an unstructured practice group (UPG) without skill progression. Both groups practiced bimanual activities 6h a day for 15days. Children were asked to perform a bimanual drawer-opening task before and after intensive practice using 3-D kinematic analyses. OUTCOMES AND RESULTS: Both groups showed improved temporal bimanual coordination with increased normalized movement overlap of the two hands (p=0.005) and decreased goal synchronization time (p=0.002). However, only the SPG showed decreased trunk involvement (p=0.01) and increased elbow joint excursion (p=0.017) with decreased variability (p=0.015 and 0.048 respectively). CONCLUSIONS AND IMPLICATIONS: The results highlighted the importance of skill progression for intensive practice to improve upper extremity and trunk movement control and consistency for children with USCP.

Including a Lower-Extremity Component during Hand-Arm Bimanual Intensive Training does not Attenuate Improvements of the Upper Extremities: A Retrospective Study of Randomized Trials.

Hand-Arm Bimanual Intensive Therapy (HABIT) promotes hand function using intensive practice of bimanual functional and play tasks. This intervention has shown to be efficacious to improve upper-extremity (UE) function in children with unilateral spastic cerebral palsy (USCP). In addition to UE function deficits, lower-extremity (LE) function and UE-LE coordination are also impaired in children with USCP. Recently, a new intervention has been introduced in which the LE is simultaneously engaged during HABIT (Hand-Arm Bimanual Intensive Therapy Including Lower Extremities; HABIT-ILE). Positive effects of this therapy have been demonstrated for both the UE and LE function in children with USCP. However, it is unknown whether the addition of this constant LE component during a bimanual intensive therapy attenuates UE improvements observed in children with USCP. This retrospective study, based on multiple randomized protocols, aims to compare the UE function improvements in children with USCP after HABIT or HABIT-ILE. This study included 86 children with USCP who received 90 h of either HABIT (n = 42) or HABIT-ILE (n = 44) as participants in previous studies. Children were assessed before, after, and 4-6 months after intervention. Primary outcomes were the ABILHAND-Kids and the Assisting Hand Assessment. Secondary measures included the Jebsen-Taylor Test of Hand Function, the Pediatric Evaluation of Disability Inventory [(PEDI); only the self-care functional ability domain] and the Canadian Occupational Performance Measure (COPM). Data analysis was performed using two-way repeated-measures analysis of variance with repeated measures on test sessions. Both groups showed similar, significant improvements for all tests (test session effect p < 0.001; group × test session interaction p > 0.05) except the PEDI and COPM. Larger improvements on these tests were found for the HABIT-ILE group (test session effect p < 0.001; group × test session interaction p < 0.05). These larger improvements may be explained by the constant simultaneous UE-LE engagement observed during the HABIT-ILE intervention since many daily living activities included in the PEDI and the COPM goals involve the LE and, more specifically, UE-LE coordination. We conclude that UE improvements in children with USCP are not attenuated by simultaneous UE-LE engagement during intensive intervention. In addition, systematic LE engagement during bimanual intensive intervention (HABIT-ILE) leads to larger functional improvements in activities of daily living involving the LE.