Marisa Cotta Mancini

Resumo: Objetivo: Compreender as percepções das famílias e terapeutas sobre a sua participação em um programa domiciliar individualizado via telessaúde implementado para crianças e adolescentes com paralisia cerebral (PC) durante a pandemia da COVID‐19 no Brasil. Método: Estudo qualitativo descritivo com 13 famílias de crianças/adolescentes com PC (Sistema de Classificação da Função Motora Grossa ‐ GMFCS níveis IV‐V) e 20 terapeutas que participaram de um programa domiciliar individualizado via telessaúde. Entrevistas semiestruturadas online foram realizadas com os participantes ao final da intervenção para compreender suas expectativas, desafios, benefícios e sugestões para serviços futuros. As entrevistas foram transcritas para realização de análise temática. Resultados: Os três temas foram: 1‐ Medo do desconhecido, 2‐ Novos caminhos, 3‐ Benefícios e perspectivas futuras. Os participantes reconheceram que o envolvimento ativo da família durante a intervenção, o estabelecimento de objetivos individualizados e a comunicação entre pais e terapeutas levaram a mudanças no envolvimento das crianças, nas rotinas das famílias e no empoderamento dos pais em relação ao processo de reabilitação dos seus filhos. Conclusão: O estabelecimento de parceria entre terapeutas e famílias, associando conhecimento técnico e experiência de vida, contribuiu para a implementação bem‐sucedida da intervenção. Ações futuras podem envolver a adoção de modelos de intervenção híbridos, focados nas necessidades específicas das famílias de crianças/adolescentes com paralisia cerebral.

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. 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. 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." 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.

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, d_performance = 1.33; d_satisfaction = 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.

Background: Children diagnosed with cerebral palsy (CP) often experience various limitations, particularly in gross motor function and activities of daily living. Transcranial direct current stimulation (tDCS) is a noninvasive brain stimulation technique that has been used to improve movement, gross motor function, and activities of daily living. Objective: This study aims to evaluate the potential additional effects of physiotherapy combined with tDCS in children with CP in comparison with physiotherapy only. Methods: This is a 2-arm randomized controlled trial that will compare the effects of tDCS as an adjunctive treatment during rehabilitation sessions to rehabilitation without tDCS. Children with CP classified by the Gross Motor Function Classification System as levels I and II will be randomly assigned to either the sham + rehabilitation group or the tDCS + rehabilitation group. The primary outcome will be the motor skills assessed using the Gross Motor Function Measure domain E scores, and the secondary outcome will be the measurement scores of the children’s quality of life. The intervention will consist of a 10-day stimulation protocol with tDCS spread over 2 weeks, with stimulation or sham tDCS administered for 20 minutes at a frequency of 1 Hz, in combination with physiotherapy. Physical therapy exercises will be conducted in a circuit based on each child’s baseline Gross Motor Function Measure results. The participants’ changes will be evaluated and compared in both groups. Intervenient features will be tested. Results: Data collection is ongoing and is expected to be completed by January 2025. A homogeneous sample and clear outcomes may be a highlight of this protocol, which may allow us to understand the potential use of tDCS and for whom it should or should not be used. Conclusions: A study with good evidence and clear outcomes in children with CP might open an avenue for the potential best use of neurostimulation. Trial Registration: Brazilian Registry of Clinical Trials RBR-104h4s4y; https://tinyurl.com/47r3x2e4 International Registered Report Identifier (IRRID): PRR1-10.2196/52922

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.

BACKGROUND Children diagnosed with cerebral palsy (CP) often experience various limitations, particularly in gross motor function and activities of daily living. Transcranial direct current stimulation (tDCS) is a noninvasive brain stimulation technique that has been used to improve movement, gross motor function, and activities of daily living. OBJECTIVE This study aims to evaluate the potential additional effects of physiotherapy combined with tDCS in children with CP in comparison with physiotherapy only. METHODS This is a 2-arm randomized controlled trial that will compare the effects of tDCS as an adjunctive treatment during rehabilitation sessions to rehabilitation without tDCS. Children with CP classified by the Gross Motor Function Classification System as levels I and II will be randomly assigned to either the sham + rehabilitation group or the tDCS + rehabilitation group. The primary outcome will be the motor skills assessed using the Gross Motor Function Measure domain E scores, and the secondary outcome will be the measurement scores of the children’s quality of life. The intervention will consist of a 10-day stimulation protocol with tDCS spread over 2 weeks, with stimulation or sham tDCS administered for 20 minutes at a frequency of 1 Hz, in combination with physiotherapy. Physical therapy exercises will be conducted in a circuit based on each child’s baseline Gross Motor Function Measure results. The participants’ changes will be evaluated and compared in both groups. Intervenient features will be tested. RESULTS Data collection is ongoing and is expected to be completed by January 2025. A homogeneous sample and clear outcomes may be a highlight of this protocol, which may allow us to understand the potential use of tDCS and for whom it should or should not be used. CONCLUSIONS A study with good evidence and clear outcomes in children with CP might open an avenue for the potential best use of neurostimulation. CLINICALTRIAL Brazilian Registry of Clinical Trials RBR-104h4s4y; https://tinyurl.com/47r3x2e4 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/52922

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.