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1.
PLoS One ; 19(5): e0301718, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38768147

RESUMO

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.


Assuntos
Cuidadores , Crianças com Deficiência , Pesquisa Qualitativa , Humanos , Adolescente , Criança , Feminino , Masculino , Cuidadores/psicologia , Crianças com Deficiência/psicologia , Adulto , Percepção , Pessoas com Deficiência/psicologia , Inquéritos e Questionários , Terapeutas Ocupacionais/psicologia
2.
Disabil Rehabil Assist Technol ; : 1-11, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38715345

RESUMO

AIM: The congenital Zika Syndrome (CZS) often leads to severe motor impairment in affected children, making independent walking unlikely. Early introduction of motorized mobility through ride-on cars has been recommended for young children with severe motor impairment, enabling independent movement in various environments. This study aims to explore mothers' perceptions of their children's experiences while using ride-on cars at home and in the community, focusing on children with CZS. METHODS: This is a qualitative and descriptive study design using the Photovoice method. Four mothers of children with CZS, participating in the 'Go Zika Go' intervention project, were included. The research involved the following six steps: 1) Presentation of guide questions and Photovoice training; 2) Participants capturing photos; 3) Individual interviews to contextualize the photos; 4) Transcription and data analysis using thematic analysis principles; 5) Validation of analyses by mothers; and 6) Exhibition of photos to the community. RESULTS: The mothers and researchers selected the 21 most relevant photographs, which revealed five main themes related to the use of motorized ride-on cars: 1) Experiences of participation; 2) Independence in mobility; 3) Characteristics of mobility devices; 4) Family support; and 5) Accessibility of the environment. CONCLUSION: The narratives provided by participants, along with photographs depicting the daily lives of children with CZS, shed light on aspects of functionality, autonomy, and participation. The use of these devices contributes to overall equity, breaking down social and cultural barriers and enabling children with disabilities to be seen as equals by their peers.


To understand the barriers and facilitators experienced by children with Congenital Zika Syndrome (CZS) when using motorized ride-on cars at home and in the community can contribute to the planning of interventions aimed at implementing motorized mobility as an intervention modality for children with severe motor and cognitive impairments in low- and middle-income countries.The Photovoice method can be useful to capture the experiences of children with severe disabilities such as Congenital Zika Syndrome while using adapted motorized ride-on cars.Involving mothers of children with severe disabilities as co-researchers can contribute to the advancement of more relevant research for the public/patient, considering that they are specialists by knowledge.The use of motorized mobility for children with CZS can minimize social disadvantages, favor equity in its entirety, providing for the breakdown of cultural and attitudinal barriers.

3.
Rev Paul Pediatr ; 42: e2023043, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38359317

RESUMO

OBJECTIVE: To characterize the environmental factors of children and adolescents with Cerebral Palsy (CP) in the state of Minas Gerais (MG), Brazil. METHODS: This is a cross-sectional study involving 164 caregivers of children/adolescents with CP, aged 1-14 years. The Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS) were used to classify the participants' functioning, and environmental factors were evaluated by an on-line questionnaire that examined products and technologies, physical environment, services, and systems. A descriptive analysis was performed using percentage and frequency. RESULTS: Most participants had bilateral CP (66.9%) and 45% of them were spastic. Levels II and V of the GMFCS and MACS were the most frequent. About half (49.4%) used anticonvulsants, 27.4% underwent botulinum toxin application, and 29% went through orthopedic surgery in the lower limbs. Among the participants, 71.3% used orthoses in the lower limbs, and 51.8% used the public health care system. Most had access to physiotherapy (91.5%), but found difficulties to access interventions with other professionals, such as psychologists (28%) and nutritionists (37.8%). The school was the most frequently adapted environment (78%), and had the highest level of structural adaptation (42.7%). CONCLUSIONS: The results of this study suggest that the barriers to access health services and barriers to the physical environment may impact participation and social inclusion.


Assuntos
Paralisia Cerebral , Criança , Humanos , Adolescente , Paralisia Cerebral/epidemiologia , Destreza Motora , Estudos Transversais , Brasil/epidemiologia , Avaliação da Deficiência
4.
Disabil Rehabil Assist Technol ; : 1-14, 2024 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-38166551

RESUMO

PURPOSE: To explore the feasibility of an intervention using modified ride-on cars in terms of acceptability and potential changes in goal attainment, mobility, social function, and participation of children with Congenital Zika Syndrome (CZS). MATERIALS AND METHODS: A pre- and post-intervention feasibility study was conducted with children with CZS, levels IV and V of the Gross Motor Function Classification System (GMFCS). The intervention consisted of 12 weeks of training (3 times a week for 40 min per session) and 4 weeks of follow-up. The primary outcomes included adherence, satisfaction, and learning in mobility. Secondary outcomes encompassed goal attainment, mobility, social/cognitive function, and participation. Descriptive statistics were performed. To explore potential individual changes with the intervention, Wilcoxon test was used to analyze Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) data and Young Children's Participation and Environment Measure (YC-PEM)/Participation and Environment Measure for Children and Youth (PEM-CY), along with standard error measurements of the PEDI-CAT domains. RESULTS: Four children participated (median age 4.75 years; two females: three at level V on the GMFCS). Adherence was 75% of the total intervention time, and family members reported being satisfied or very satisfied. Children showed gains in learning the use of the modified ride-on cars and an increase in goal attainment after the intervention. Individual changes were observed in the PEDI-CAT domains (mobility and social/cognitive), but there were no significant changes in participation outcomes. CONCLUSIONS: Children with CZS at GMFCS levels IV and V can learn to use motorized ride-on cars, attainment goals, and experience satisfaction.


Motorized mobility for children with Congenital Zika Syndrome and severe physical and cognitive disabilities is feasible and can encourage future interventions focused on activities and participation.This research contributes to the understanding of the potential changes that motorized mobility can have on goal attainment, satisfaction, and learning.Motorized mobility can be a means to enable children with Congenital Zika Syndrome to have opportunities for participation and guarantee their rights.

5.
Rev. Paul. Pediatr. (Ed. Port., Online) ; 42: e2023043, 2024. tab, graf
Artigo em Inglês | LILACS-Express | LILACS | ID: biblio-1535360

RESUMO

ABSTRACT Objective: To characterize the environmental factors of children and adolescents with Cerebral Palsy (CP) in the state of Minas Gerais (MG), Brazil. Methods: This is a cross-sectional study involving 164 caregivers of children/adolescents with CP, aged 1-14 years. The Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS) were used to classify the participants' functioning, and environmental factors were evaluated by an on-line questionnaire that examined products and technologies, physical environment, services, and systems. A descriptive analysis was performed using percentage and frequency. Results: Most participants had bilateral CP (66.9%) and 45% of them were spastic. Levels II and V of the GMFCS and MACS were the most frequent. About half (49.4%) used anticonvulsants, 27.4% underwent botulinum toxin application, and 29% went through orthopedic surgery in the lower limbs. Among the participants, 71.3% used orthoses in the lower limbs, and 51.8% used the public health care system. Most had access to physiotherapy (91.5%), but found difficulties to access interventions with other professionals, such as psychologists (28%) and nutritionists (37.8%). The school was the most frequently adapted environment (78%), and had the highest level of structural adaptation (42.7%). Conclusions: The results of this study suggest that the barriers to access health services and barriers to the physical environment may impact participation and social inclusion.


RESUMO Objetivo: Caracterizar os fatores ambientais de crianças e adolescentes com paralisia cerebral (PC) no estado de Minas Gerais (MG), Brasil. Métodos: Trata-se de um estudo transversal envolvendo 164 cuidadores de crianças/adolescentes com PC, na faixa etária de um a 14 anos. O Sistema de Classificação da Função Motora Grossa (GMFCS) e o Sistema de Classificação da Habilidade Manual (MACS) foram utilizados para classificar a funcionalidade dos participantes e os fatores ambientais foram avaliados por um questionário on-line que abordou produtos e tecnologias, ambiente físico, serviços e sistemas. Análises descritivas foram realizadas por meio de porcentagem e frequência. Resultados: A maioria dos participantes tinha PC bilateral (66,9%) e 45% deles eram espásticos. Os níveis II e V do GMFCS e MACS foram os mais frequentes. Cerca de metade (49,4%) fazia uso de anticonvulsivantes, 27,4% realizaram aplicação de toxina botulínica e 29% cirurgia ortopédica em membros inferiores. Utilizavam órteses em membros inferiores 71,3% e eram usuários do sistema público de saúde 51,8%. A maioria tinha acesso à fisioterapia (91,5%), mas dificuldade de acesso a intervenções com outros profissionais, como psicólogos (28%) e nutricionistas (37,8%). A escola foi o ambiente mais frequentado (78%) e também mais adaptado estruturalmente (42,7%). Conclusões: Os resultados deste estudo sugerem que barreiras de acesso aos serviços de saúde e barreiras no ambiente físico podem impactar a participação e inclusão social.

6.
Glob Health Sci Pract ; 11(6)2023 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-38123996

RESUMO

INTRODUCTION: Congenital Zika syndrome (CZS) is a health condition that has affected the development of thousands of children in Brazil. Because it is a new condition, its understanding is an ongoing process. Therefore, it is important to know the rehabilitation interventions being delivered to improve the functioning of these children. We aimed to describe the practices of physical therapists (PTs) and occupational therapists (OTs) who provide follow-up care for children with CZS in Brazil. METHODS: This cross-sectional study included PTs and OTs who assist children with CZS in Brazil. An online questionnaire was used to verify the participants' personal characteristics and professional work environment, as well as the rehabilitation programs they implemented in Brazil for children with CZS. Data were analyzed using descriptive statistics. RESULTS: A total of 116 professionals (79 PT and 37 OT) who work mainly in public health services (81.9%) participated in the study. Of these, 24.1% plan interventions based on reading scientific articles, 66.4% did not report using the biopsychosocial model, 52.6% do not perform any assessments before starting an intervention, 31.9% use neurodevelopmental treatment, and 22.4% use sensorimotor stimulation interventions. The majority of the interventions are delivered 1 to 2 times a week, lasting up to 1 hour. CONCLUSIONS: Professional training and knowledge translation strategies are needed to implement evidence-based practices and improve the quality of rehabilitation programs for Brazilian children with CZS.


Assuntos
Infecção por Zika virus , Zika virus , Criança , Humanos , Infecção por Zika virus/terapia , Infecção por Zika virus/congênito , Brasil , Estudos Transversais , Terapeutas Ocupacionais , Estudos Longitudinais
7.
Health Expect ; 26(6): 2500-2513, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37596733

RESUMO

INTRODUCTION: In Brazil, more than 3500 children with congenital Zika syndrome (CZS) face difficulties participating in activities of daily living, which may be aggravated by health emergencies, such as the COVID-19 pandemic. Participation could be defined as the individual's involvement in daily life situations, and participation restrictions are problems that may arise in involvement in everyday situations. AIM: To explore the daily lives of children with CZS during the COVID-19 pandemic using photographic narratives captured by mothers and discuss possible strategies to improve participation results. METHODS: In this participatory action research, seven young Brazilian mothers acted as co-researchers using photovoice to describe the experiences of their children with CZS (from 2 to 5 years old). Also, mothers contributed to validate the contents. The research was conducted online and included the following steps: pilot study, recruitment, individualized training, sociodemographic interview, photovoice training, photo taking, focus group for contextualization, data transcription and analysis and validation of analyses by the mothers. RESULTS: Content analysis revealed five categories that influenced the participation of the children: participation preferences, family relationships, access to healthcare, access to education and social isolation. Regarding participation preferences, mothers reported their children's desire to play with peers and family members and have autonomy. Mothers described the family environment as a happy, peaceful and safe place for the children. Lack of therapy was perceived to negatively impact the health of children; thus, treatments were considered essential for child development. Access to education included accessibility of remote education and a perceived lack of infrastructure and pedagogical preparation. Last, social isolation due to COVID-19 directly affected the daily lives and behaviour of the children, interrupting therapies and medical appointments. CONCLUSION: The photos and narratives captured several aspects of the daily lives of children with CZS impacted by the COVID-19 pandemic, reinforcing the importance of considering the negative effects of social isolation and offering education and social assistance to promote participation and integral health. PATIENT/PUBLIC CONTRIBUTION: Consistent with a participatory action research framework, Mothers acted as co-researchers and participated in all stages of the research, especially in validating the data analysed by the researchers.


Assuntos
COVID-19 , Infecção por Zika virus , Zika virus , Feminino , Criança , Humanos , Pré-Escolar , Infecção por Zika virus/epidemiologia , Infecção por Zika virus/congênito , Atividades Cotidianas , Pandemias , Projetos Piloto , COVID-19/epidemiologia , Mães , Surtos de Doenças , Brasil/epidemiologia
8.
Physiother Can ; 75(1): 83-91, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37250728

RESUMO

Purpose: To describe the initial steps in the development of a family-completed, modified version of the Gross Motor Function Measure (GMFM-88) to report gross motor function of young people with cerebral palsy in their natural environments. Methods: Development of the Gross Motor Function - Family Report (GMF-FR) was based on expert opinion involving 13 experienced clinicians and researchers, in four steps: (1) item identification to target items that reflect functional gross motor performance; (2) item selection; (3) critical analysis of the items; and (4) item and scoring modification. Results: Several modifications to existing items and scoring were made, including wording changes to optimize ease of families' understanding, the addition of photographs to illustrate all items, changes to the items to enable use of furniture instead of specialized equipment, and modifications to scoring criteria to ensure a focus on functional motor skills. Ultimately, 30 items were selected, and specific testing/scoring instructions were created for each item. Conclusions: GMF-FR is a new family-report tool, based on the GMFM-88. When validated, it can be used as a telehealth outcome measure to capture family-reported functional motor skill performance in home and community environments.


Objectif : décrire les premières étapes de l'élaboration d'une version modifiée de la mesure de la fonction motrice globale (GMFM-88) remplie par la famille pour rendre compte de la fonction motrice globale des jeunes ayant la paralysie cérébrale dans leur environnement naturel. Méthodologie : l'élaboration de l'outil de fonction motrice globale ­ rapport familial (GMF-FR), qui repose sur l'avis d'experts ­ soit 13 cliniciens et chercheurs d'expérience ­, s'est déclinée en quatre étapes : 1) détermination des points, pour cibler ceux qui reflète le rendement de la fonction motrice globale; 2) sélection des points; 3) analyse critique des points et 4) modifications aux points et aux scores. Résultats : les experts ont apporté plusieurs modifications aux points et aux scores en place, y compris de la reformulation pour que les familles comprennent plus facilement, l'ajout de photos pour illustrer tous les points, des changements aux points pour utiliser des meubles plutôt que du matériel spécialisé et la modification des critères des scores afin de se concentrer sur les habiletés motrices fonctionnelles. Au bout du compte, les experts ont retenu 30 points, chacun étant assorti de directives précises sur le test et le score. Conclusions : La mesure GMF-FR est un nouvel outil de déclaration par la famille, inspiré du GMFM-88. Une fois validé, il peut être utilisé comme mesure de résultats en télésanté, afin de saisir le rendement des habiletés motrices fonctionnelles à la maison et dans les environnements communautaires.

9.
Pediatr Phys Ther ; 35(3): 304-312, 2023 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-37095616

RESUMO

PURPOSE: To describe the patterns, preferences, and predictors of participation in leisure activities of children and young people with physical disabilities from Brazil. METHODS: This is a cross-sectional study that included 50 children/young people with physical disabilities from the southeast of Brazil. The children were assessed using the Children's Assessment of Participation and Enjoyment and Preferences for Activities. RESULTS: Children/young people participated in an average of 38% of the activities, with a greater number and frequency of informal, recreational, social, and self-improvement activities. The average frequency of participation in the activities was twice in the previous 4 months. The enjoyment in the participated activities was high. There was a greater preference for recreational, social, and physical activities. Age and functional classification were predictors of participation. CONCLUSION: This study of children with disabilities from the southeast of Brazil supports studies in other low- and middle-income countries, demonstrating low diversity and intensity of participation in leisure activities, but with high levels of enjoyment.


Assuntos
Crianças com Deficiência , Atividades de Lazer , Humanos , Criança , Adolescente , Brasil , Estudos Transversais , Exercício Físico , Inquéritos e Questionários , Participação Social
10.
BMJ Open ; 13(1): e068486, 2023 01 31.
Artigo em Inglês | MEDLINE | ID: mdl-36720567

RESUMO

BACKGROUND: There is a need to investigate relevant, acceptable and feasible approaches that promote participation in leisure-time physical activity for children with cerebral palsy (CP). The aim of this study is to assess the feasibility of a randomised controlled trial comparing a peer-group intervention focused on improving physical literacy (Sports Stars) with the combination of Sports Stars and a context-focused intervention (Pathways and Resources for Engagement and Participation, PREP) for ambulant children with CP in Brazil. METHODS: In this feasibility trial, 18 ambulant children (aged 6-12 years) with CP will be randomised into two groups (nine per group): (1) Sports Stars and (2) Sports Stars plus PREP. The Sports Stars group will receive 8 weekly group sessions, focusing on developing the physical, social, cognitive and psychological skills required to participate in popular Brazilian sports. The combined Sports Stars and PREP group will receive Sports Stars in addition to eight individual PREP sessions focused on overcoming environmental barriers to participation. The primary outcome will include feasibility measures: willingness to participate in an RCT, eligibility and recruitment rates, maintenance of evaluator blinding, acceptability of screening procedures and random allocation, feasibility of evaluating outcomes, contamination between the groups, intervention adherence, treatment satisfaction, understanding of the intervention and implementation resources. Additional instruments will be applied to obtain data related to leisure-time physical activity participation goals, overall participation (home, school and community), physical literacy, level of physical activity and family empowerment. Outcomes will be assessed before, after and 12 weeks after intervention. ETHICS AND DISSEMINATION: This feasibility trial has been approved by ethical Federal University of Minas Gerais' Ethics Review Committee (CAAE: 33238520.5.0000.5149). All potential subjects will provide written informed consent. The results of this study will be published in peer-reviewed journals and be presented at academic conferences. TRIAL REGISTRATION NUMBERS: RBR-4m3b4b6, U1111-1256-4998.


Assuntos
Paralisia Cerebral , Esportes , Criança , Humanos , Estudos de Viabilidade , Atividade Motora , Exercício Físico , Ensaios Clínicos Controlados Aleatórios como Assunto
11.
J Autism Dev Disord ; 53(4): 1403-1412, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34669103

RESUMO

Children with autism spectrum disorder (ASD) generally have a delay in the development of motor skills when compared to typical children, however, to date, no study has investigated whether motor limitations can interfere in the participation of these children. The objectives of this study were: verify if the motor skills can explain the frequency, the percentage of number of activities, the involvement and the desire to change in participation at home, school and community of children with autism spectrum disorder (ASD) and; identify if contextual factors would modify the association between motor skills and participation outcomes. The participation and the motor skills were evaluated in 30 children with ASD between 5 and 10 years old. Participation outcomes were measured by the Participation and Environment Measure-Children and Youth (PEM-CY) and the motor skills were assessed by the Timed Up and Go, Timed Up and Down Stairs, Test of Gross Motor Development-2nd edition and Pediatric Balance Scale. The results of the study demonstrated that the motor skills of the locomotion, objects control, change position and balance explained participation outcomes of children with ASD classified from mild to moderate, between 5 and 10 years old. Moreover, the sex variable modified the association between the motor skills and the school participation, with girls performing less activities at this setting.


Assuntos
Transtorno do Espectro Autista , Feminino , Adolescente , Humanos , Pré-Escolar , Criança , Transtorno do Espectro Autista/complicações , Destreza Motora , Instituições Acadêmicas
12.
Fisioter. Mov. (Online) ; 36: e36130, 2023. graf
Artigo em Inglês | LILACS-Express | LILACS | ID: biblio-1520914

RESUMO

Abstract Introduction Patient and public involvement has numerous benefits for research; however, there are challenges to its implementation, such as the lack of tools to guide participant engagement in research. The Involvement Matrix (IM) is a tool that facilitates discussion about the role that participants play in research projects, promoting more active public involvement. Objective To translate IM materials into Brazilian Portuguese in order to facilitate their use and guide researchers. Methods Authorization to translate the original material into Brazilian Portuguese was obtained from the authors. Next, the translated material underwent backtranslation. The resulting version was verified by the original IM authors, ensuring semantic and content accuracy. Results The Involvement Matrix (IM) was translated into Portuguese and then backtranslated into English. The researchers discussed the translated version with the IM authors, with minimal adjustments needed in the backtranslation, and no changes made to the Portuguese version. After the approval of the final Brazilian Portuguese version, the translated tools were made available, including a Practical Guide, a Word Version, a Checklist, a Fact Sheet, an Overview with Examples, and an Animated Video with Brazilian Portuguese subtitles. Conclusion The various IM materials are adequately translated and freely available for use in Brazil. It is a valuable tool to guide public and patient involvement in research.


Resumo Introdução O envolvimento do paciente e do público traz diversos benefícios para a pesquisa, no entanto, existem desafios para sua implementação, como a falta de ferramentas que orientem o engajamento dos participantes em pesquisas que os envolvem. A Involvement Matrix (IM) é uma ferramenta que facilita o diálogo sobre o papel que o participante da pesquisa deseja desempenhar em projetos de pesquisas pro-movendo um envolvimento mais ativo desse público. Objetivo Traduzir os materiais da IM para o português brasileiro, a fim de disponibilizar seu uso no Brasil e ori-entar pesquisadores. Métodos Solicitou-se autorização aos autores do instrumento original para traduzi-lo para o português brasileiro. Em seguida, o material traduzido passou por um processo de retrotradução. O resultado foi verificado pelos autores da IM, garantindo a precisão semântica e de conteúdo. Resultados A Matriz de Envolvimento (ME) foi traduzida para o português e retrotraduzida ao inglês. Posteriormente, os pesquisadores da versão brasileira realizaram uma reunião com os autores da ME para esclarecer dúvi-das, havendo a necessidade de mínimos ajustes na retrotradução, sem mudanças da versão em português. Após a aprovação da versão final em português brasi-leiro, foram disponibilizadas as ferramentas traduzidas: um Guia Prático, uma Versão em Word, uma Lista de Verificação, uma Ficha Técnica, uma Visão Geral com Exemplos e um Vídeo Animado legendado em português brasileiro. Conclusão Os diversos materiais da ME estão adequadamente traduzidos e disponíveis gratuitamente para uso no Brasil. Trata-se de uma ferramenta valiosa para guiar o envolvimento do público e do paciente em pesquisas.

13.
Health Expect ; 25(6): 2828-2836, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36281641

RESUMO

INTRODUCTION: Promoting social inclusion of children with congenital Zika virus syndrome (CZS) is challenging, mostly, when there is a transport problem, low access to information and a long distance between the house and health services. Participation can be understood as involvement in a life situation and is strongly influenced by physical, social and attitudinal environmental factors; however, was still little explored in the case of children with CZS. In this sense, this study aimed to explore the perception of caregivers about the environmental needs of children with CZS, differentiating barriers and facilitators. METHODS: This is qualitative research. Thematic analysis was used to identify the environmental needs perceived by caregivers of children with CZS. The patient public involvement (PPI) approach was incorporated with the purpose of validating the data analysis performed by the researchers. After this step, the data were categorized in terms of barriers and facilitators and validated by the group of researchers. RESULTS: A relevant environmental need reported by caregivers as a barrier was social support for children with CZS. Ableism was also evidenced as an important attitudinal barrier. Health services were essential for the lives of children with CZS and the availability of auxiliary devices as facilitators of participation. Environmental factors related to medication and food routines were, for the most part, facilitators. CONCLUSION: This study contributes to critical approaches to the impacts linked to environmental factors of children with CZS, recognition of these children is an evolving process and fundamental to basic rights for adequate living in society. The data point to the need to implement public policies aimed at children with CZS, as well as the availability of qualified professionals to apply family-centred care and skills-focused management. Building friendly environments that promote broad social participation will contribute to the healthy growth of children with CZS. PATIENT OR PUBLIC CONTRIBUTION: Six caregivers (20% of the caregivers) as part of the PPI approach were contacted and participated in individual virtual meetings to discuss the results of the thematic analysis regarding the environmental needs of children with CZS.


Assuntos
Infecção por Zika virus , Zika virus , Criança , Humanos , Feminino , Infecção por Zika virus/congênito , Cuidadores , Apoio Social , Mães , Pesquisa Qualitativa , Brasil
15.
Saúde Redes ; 8(Sup 1): 361-373, 20220708.
Artigo em Português | LILACS-Express | LILACS | ID: biblio-1395899

RESUMO

Este relato de experiência busca trazer discussões sobre a clareza de papéis entre profissionais a partir da observação participante realizada no Núcleo Ampliado de Saúde da Família, localizado em Santa Cruz, interior do Rio Grande do Norte. Durante o processo, o grupo de apoio matricial, do Programa de Educação pela Saúde no âmbito da Interprofissionalidade, se inseriu no dia a dia no serviço e, mais especificamente, nas visitas domiciliares realizadas pelos profissionais. A partir da observação participante, discutimos como parte dos profissionais ainda possui uma representação cotidiana sobre a atuação dos colegas e trabalham de maneira individualizada. Ainda, destacamos que os profissionais que atuam mais frequentemente juntos parecem ter uma melhor compreensão da atuação dos colegas, no entanto, o trabalho interprofissional propriamente dito não foi observado durante as visitas domiciliares realizadas.

17.
J Clin Med ; 12(1)2022 Dec 26.
Artigo em Inglês | MEDLINE | ID: mdl-36614983

RESUMO

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.

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