ABSTRACT
OBJECTIVE: To analyze the perceptions of professionals, caregivers, children, and adolescents with disabilities regarding the implementation of the My Abilities First (MAF) tool in Specialized Child Rehabilitation Centers (CERs). METHOD: This is a qualitative research based on Reflexive Thematic Analysis (RTA). The study involved twenty-seven intentionally selected individuals, comprising 12 physiotherapists, 4 occupational therapists, 11 caregivers, 9 children and 2 adolescents. Participants completed sociodemographic and clinical questionnaires and took part in semi-structured online interviews, focusing on two themes: Positive health approaches and the MAF tool. The study was approved by the local ethics committee (opinion 4.779.175). RESULTS: Reflexive Thematic Analysis of the interviews resulted in two themes: (1) Perceptions regarding the MAF tool as an educational and contributory process to enhance the inclusion and participation of children and adolescents with disabilities, and (2) Barriers and facilitators for the implementation process of the MAF tool. The implementation of MAF was identified as a driving factor in promoting equity and increased participation of children and adolescents with disabilities in various settings, including health, education, and leisure. Interviewees highlighted the need to confront attitudinal, communication, and social barriers that may hinder the implementation of the tool. CONCLUSION: The implementation of the MAF tool was perceived as an innovation due to its focus on the abilities of individuals with disabilities. However, there is a need to restructure it to broaden its scope and access to different contexts in order to confront barriers and enhance the inclusion and participation of children and adolescents with disabilities.
Subject(s)
Caregivers , Disabled Children , Qualitative Research , Humans , Adolescent , Child , Female , Male , Caregivers/psychology , Disabled Children/psychology , Adult , Perception , Disabled Persons/psychology , Surveys and Questionnaires , Occupational Therapists/psychologyABSTRACT
The participation of adolescents with cerebral palsy (CP) within the community is reduced compared to their peers and is a barrier to their socialization, self-determination and quality of life. Patient and Public Involvement (PPI) is a key strategy for successful interventions, especially when involvement of the stakeholders takes place at all stages of the research. Co-design can be crucial for success as researchers, patients with CP and their families work together to bring the necessary elements to the interventions to be designed. The objectives will be: (1) To co-design an intervention aimed at improving the participation of adolescents with significant motor disabilities within the community in partnership with adolescents with CP, families and rehabilitation professionals. (2) To assess the feasibility of the co-design process in partnership with interested parties. The study will be based on Participatory Action Research (PAR) and will be held in Spain and Brazil. In both countries, the study will be carried out remotely with nine adolescents aged 12 to 17 years with CP, Gross Motor Function Classification System (GMFCS) levels IV-V, their families and six health professionals (physiotherapists and occupational therapists). Different dialogue groups will be created to involve adolescents, families and health professionals to the research's project. To manage their involvement in the co-design process, the Involvement Matrix (IM) will be used, and according to the IM phases, four steps will be included in the research: (1) Preparation; (2) Co-design; (3) Analysis: results of the intervention protocol and the study's feasibility and (4) Dissemination of results. Partnering with the public to design an intervention to improve participation can bring better results compared to protocols designed only by health professionals. In addition, it will allow for knowing the needs of adolescents with CP in terms of participation within the community. The study will also explore which roles were chosen by all participants and how they felt while actively participating in the process of co-designing an intervention protocol and their own perspectives on the use of the involvement matrix.
ABSTRACT
Abstract Objectives: to assess the interrater reliability of the Saint-Anne Dargassies Scale in assessing neurological patterns of healthy preterm newborns. Methods: twenty preterm newborns met the inclusion criteria for participation in this prospective study. The neurologic examination was performed using the Saint-Anne Dargassies Scale, showing normal serial cranial ultrasound examination. In order to test the reliability, the study was structured as follows: group I (rater 1/physiotherapist; rater 2/neonatologist); group II (rater 3/physiotherapist; rater 4/child neurologist) and the gold standard (expert and professor in pediatric neurology). Results: high interrater agreement was observed between groups I - II compared with the gold standard in assessing postural pattern (p<0.01). Regarding the assessment ofprimitive reflexes, greater agreement was observed in the evaluation of palmar grasp reflex and Moro reflex (p< 0.01) for group I compared with the gold standard. An analysis of tone demonstrated heterogeneous agreement, without compromising the reliability of the scale. The probability of equality between measurements of head circumference in the two groups, compared with the gold standard, was observed. Conclusions: the Saint-Anne Dargassies Scale demonstrated high reliability and homogeneity with significant power of reproducibility and may be capable to identify preterm newborns suspected of having neurological deficits.
Resumo Objetivos: avaliar a confiabilidade inter-observadores na avaliação do padrão neurológico de recém-nascidos pré-termo saudáveis pela Escala de Saint-Anne Dargassies. Métodos: vinte recém-nascidos pré-termos foram selecionados com base nos critérios de inclusão para participarem deste estudo prospectivo. O exame neurológico foi realizado utilizando a Escala de Saint-Anne Dargassies e os exames de ultra-som craniano seriados normais. Para testar a confiabilidade da escala o estudo foi estruturado da seguinte forma: grupo I (examinador 1 /fisioterapeuta; examinador 2 / neonatologista); grupo II (avaliador 3 /fisioterapeuta; avaliador 4 / neurologista infantil) e o padrão-ouro (expert e professor em neurologia pediátrica). Resultados: foi observado uma concordância alta inter-observadores entre os grupos I -II em comparação com o padrão ouro na avaliação padrão postural (p<0,01). Em relação à avaliação dos reflexos primitivos, observou-se maior concordância na avaliação do reflexo palmar e do reflexo de Moro (p<0,01) para o grupo I em comparação com o padrão-ouro. Uma análise do tônus demonstrou acordo heterogêneo, sem comprometer a confiabilidade da escala. Observou-se a probabilidade de igualdade entre as medidas do perímetro cefálico nos dois grupos em comparação com o padrão-ouro. Conclusões: a Escala de Saint-Anne Dargassies demonstrou alta confiabilidade e homogeneidade com poder significativo de reprodutibilidade podendo identificar recém-nascidos pré-termo com suspeita de déficit neurológico.
Subject(s)
Humans , Infant, Newborn , Infant, Premature , Neonatal Screening , Data Accuracy , Neurologic Examination , Neurologic Manifestations , Skull/diagnostic imaging , Reflex, Startle , CephalometryABSTRACT
O presente estudo pretendeu compreender qual foi o papel do Programa ?Pintando a Liberdade e Cidadania? na inclusão social em Feira de Santana. O estudo teve caráter etnográfico, e utilizou a técnica de análise de conteúdo para examinar os dados restantes da análise documental, da observação participante e de entrevistas. A maioria dos dados aponta o poder de unir e transformar as pessoas a principal razão para utilização do desporto como tema central do Programa. Dentre os seus principais objetivos, salientam-se o gerar trabalho, renda e a solidariedade. As estratégias principais utilizadas centraram-se em possibilitar oportunidades de vida aos mais carenciados e na formalização de convênios. A profissionalização e inserção profissional foram identificados como sendo os principais resultados obtidos. Entre as principais razões para o seu sucesso, salientam-se a liderança e a organização, o reconhecimento da comunidade e a busca de superação.
This study sought to understand what the role of the program "Pintando a Liberdade e Cidadania" meant to social inclusion in Feira de Santana. This ethnographic study used the technique of content analysis to examine the remaining data in all document analysis, participant observation, and interviews. Most of the data highlights the power to transform and unite people as the main reason for using sport as the central theme of the program. Among its main objectives, this program focuses on creating job opportunities, incomes, and solidarity. The strategies used focused primarily on providing assistance and better opportunities to needy families, as well as on formalizing agreements. As a result, professionalism and employability were identified as the main results achieved. Leadership, organization, community recognition, and the quest to overcome limits are greatly highlighted among the core reasons for this program?s success.
