Mental health of parents of children and adolescents who require special health care.

OBJECTIVE: To identify the manifestations presented by parents of children and adolescents who require special health attention that can impact their mental health. METHODS: exploratory, qualitative research, based on the concept of vulnerability, with data collection carried out through interviews with 18 parents of children and adolescents with special health care needs, hospitalized in the pediatric ward of a hospital in Paraná, between May/2017 and May/ 2018. Data analyzed by inductive thematic analysis. RESULTS: parents experienced situations of vulnerability when providing care at home, with repercussions on their mental health, expressed by manifestations of lack of protection, anxiety and depression. FINAL CONSIDERATIONS: It is important that health professionals seek to expand actions to promote care and reduce situations that generate threats, insecurities, concerns and damage to the health of parents, which can impact and further weaken care for children and adolescents who need attention especially health.

Implementation of the My Abilities First Tool: A qualitative study on the perceptions of professionals, caregivers, children, and adolescents with disabilities.

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.

Deficiência intelectual grave ou profunda: investigação qualitativa de estratégias maternas de enfrentamento / Discapacidad intelectual grave o profunda: investigación cualitativa de estrategias de afrontamiento materno / Severe or profound intellectual disability: a qualitative investigation of maternal coping strategies

RESUMO Objetivou-se investigar estratégias de enfrentamento relatadas por uma amostra de mães brasileiras de filhos com deficiência intelectual grave ou profunda. Os poucos estudos brasileiros sobre este objeto justificaram a exploração qualitativa do tema. Participaram quinze mães recrutadas por conveniência em serviços de saúde de um município do Estado de São Paulo, Brasil. Foram feitas entrevistas semiestruturadas individuais e uma análise temática de conteúdo. Os resultados compreendem quinze temas, induzidos diretamente do corpus e alocados em três pré-categorias baseadas em estudos teóricos sobre coping. Houve um predomínio de menções a estratégias de enfrentamento centradas no problema e nas relações interpessoais, mescladas com estratégias centradas na emoção. Nossas entrevistadas não pareceram considerar-se alvos das políticas indutoras da atenção integral às pessoas com deficiência do Sistema Único de Saúde brasileiro, vigentes há cerca de duas décadas, e cuja efetiva implementação poderia ajudar a extrapolar o cuidado baseado preponderantemente na responsabilidade parental, em suas visões. Em suas falas, há demandas de maior efetividade também dos setores de serviço social, educação e transporte. Apontaram necessidades de maior interação e apoio sociocomunitário, expressando expectativas de um progressivo redesenho cultural da ética do cuidado que fomente ações no âmbito extrafamiliar, diminuindo suas sobrecargas. Esses aspectos das falas das entrevistadas podem ser abordados no manejo clínico dos filhos. Um enfrentamento progressivamente mais saudável da condição por que passam traria benefícios diretos também aos indivíduos com deficiência.

RESUMEN El objetivo fue investigar las estrategias de afrontamiento reportadas por una muestra de madres brasileñas de niños con discapacidades intelectuales severas o profundas. Los pocos estudios brasileños sobre este objeto justificaron la exploración cualitativa del tema. Quince madres participaron, reclutadas por conveniencia en los servicios de salud de un municipio del estado de São Paulo, Brasil. Se realizaron entrevistas semiestructuradas individuales y un análisis de contenido temático. Los resultados comprenden quince temas, inducidos directamente del corpus; fueron asignados en tres categorías previas teóricamente basadas. Las menciones predominantes de estrategias de afrontamiento se referían a aquellos centrados en problemas y relaciones interpersonales, que se mezclaron con estrategias centradas en la emoción. Nuestras entrevistadas no parecían considerarse objetivos de políticas inductoras de una atención integral para las personas con deficiencia en el Sistema Único de Salud de Brasil, en vigor durante aproximadamente dos décadas, y cuya implementación efectiva podría ayudar a extrapolar la atención basada principalmente sobre responsabilidad parental, en sus opiniones. Expresaron demandas de una mayor efectividad de los sectores de servicio social, educación y transporte. Señalaron la necesidad de una mayor interacción social y apoyo sociocomunitario, y parecían expresar las expectativas de un rediseño cultural progresivo de una ética de la atención que fomente acciones en el ámbito extrafamiliar, reduciendo sus sobrecargas. Estos aspectos de las declaraciones de los entrevistados pueden abordarse en el manejo clínico de sus hijos. Un afrontamiento más saludable de la condición que están experimentando también beneficiaría a las personas con discapacidades.

ABSTRACT. The objective was to investigate coping strategies reported by a sample of Brazilian mothers of children with severe or profound intellectual disabilities. The few Brazilian studies on this object justified the present qualitative exploration of the theme. Fifteen mothers participated, recruited by convenience in health services from a municipality in the interior of the state of São Paulo, Brazil. Individual semi-structured interviews and a thematic content analysis were carried out. The results comprise fifteen themes, induced directly from the corpus; they were allocated into three pre-categories based on theoretical studies on coping. Predominant mentions of coping strategies concerned those centered on problem and interpersonal relationships, which were mixed with strategies focused on emotion. Our interviewees did not seem to consider themselves targets of policies that induce a comprehensive care for people with disability in the Brazilian Unified Health System, in force for about two decades, and whose effective implementation could help extrapolate care based predominantly, on parental responsibility in the views of the participants. They expressed demands for a greater effectiveness also from the sectors of social service, education and transport. They pointed out the need for greater social interaction and socio-community support, seeming to express expectations of a progressive cultural redesign of an ethics of care that fosters actions in the extra-family sphere, reducing their overloads. These aspects of the interviewees' statements can be addressed in the clinical management of their children. A progressively healthier coping with the condition they are experiencing would also benefit individuals with disabilities.

Estigma de cortesia e condições de saúde: revisão sistemática de literatura / Estigma de cortesía y condiciones de salud: revisión sistemática de la literatura / Courtesy stigma and health conditions: systematic literature review

RESUMO A literatura científica aponta consistentemente que grupos historicamente alvos de estigma social experimentam efeitos deletérios, em diversas esferas da vida. A despeito da sua gravidade e pervasividade, ainda existem lacunas na investigação do tema, tais como aquela voltada para o Estigma de Cortesia, que é vivenciado por pessoas que possuem vínculos afetivos ou profissionais com o indivíduo estigmatizado. O presente artigo teve como objetivo apresentar o estado da arte sobre estigma de cortesia, por meio de uma revisão sistemática de estudos empíricos originais publicados em periódicos revisados por pares e indexados nas principais bases relacionadas ao campo de investigação (PsycNET (APA), Pubmed, Bvs Brasil, Periódicos CAPES, SciELO e Pepsic). Como palavras-chave, para a busca dos resumos, utilizou-se: estigma de cortesia, estigma de afiliação e estigma de associação. Ao todo, 94 textos completos atenderam aos critérios de inclusão e exclusão. Os estudos apontaram que o estigma de cortesia tem sido investigado predominantemente entre familiares de pessoas que possuem algum tipo de problema relacionado com sua saúde mental, além de pais de crianças com algum tipo de deficiência.

RESUMEN La literatura científica señala constantemente que los grupos históricamente afectados por el estigma social experimentan efectos nocivos en diferentes ámbitos de la vida. A pesar de su gravedad y omnipresencia, todavía hay vacíos en la investigación del tema, como el centrado en el estigma de cortesía, que experimentan las personas que tienen vínculos afectivos o profesionales con el individuo estigmatizado. Este artículo tuvo como objetivo presentar el estado del arte sobre el estigma de cortesía a través de una revisión sistemática de estudios empíricos originales publicados en revistas revisadas por pares e indexados en las principales bases de datos relacionadas con el campo de investigación (PsycNET (APA), Pubmed, Bvs Brasil, CAPES, SciELO y revistas Pepsic). Como palabras clave para la búsqueda de resúmenes, utilizamos: estigma de cortesía, estigma de afiliación y estigma de asociación. En total, 94 textos completos cumplieron con los criterios de inclusión y exclusión. Los estudios han demostrado que el estigma de cortesía se ha investigado principalmente entre miembros de la familia de personas que tienen algún tipo de problema relacionado con su salud mental, además de los padres de niños con algún tipo de discapacidad.

ABSTRACT The scientific literature consistently points out that groups historically targeted by social stigma experience deleterious effects in different spheres of life. Despite its gravity and pervasiveness, there are still gaps in the investigation of the topic, such as that focused on the Courtesy Stigma, which is experienced by people who have affective or professional ties with the stigmatized individual. This article aimed to present the state of the art on Courtesy Stigma through a systematic review of original empirical studies published in peer-reviewed journals and indexed in the main databases related to the research field (PsycNET (APA), Pubmed, Bvs Brasil, CAPES, SciELO, and Pepsic journals). As keywords for the search for abstracts, we used: courtesy stigma, affiliate stigma and associative stigma. Altogether, 94 complete texts met the inclusion and exclusion criteria. Studies have shown that the Courtesy Stigma has been investigated predominantly among family members of people who have some type of problem related to their mental health, in addition to parents of children with some type of disability.

Photovoice Lessons from a Peruvian Program in Combatting Stigma for Caregivers of Children with Disabilities.

BACKGROUND: Access to resources for children with disabilities and their caregivers are lacking worldwide, especially for low-and middle-income countries, especially those of Latin origin. Furthermore, decreased social visibility coupled with minimal support available for caregivers can negatively affect their overall mental well-being. Limited community-based participatory research has been done to understand the experiences of caregivers and identify effective measures of support. OBJECTIVES: To explore the impact of childhood disabilities on caregiver well-being and to assess how interactions between caregivers and their community affect their mental well-being. METHODS: This study used photovoice and community-based participatory research methodology. We recruited participants who had children enrolled in a rehabilitative program called Rehabilitation with Hope, located in Huancayo, Peru. Participants were given three photo assignments concerning their experiences as caregivers and they presented their photos at photo discussions after each assignment. We used thematic analysis to identify the main themes that arose from the discussions. RESULTS: Four main themes were identified: stigma, social support, self-esteem, and effects of photovoice. Caregivers often felt stigmatized by the community due to their child's disability. However, they found a stronger sense of social support and overall improved sense of self-esteem through the program and participation in photovoice. CONCLUSIONS: The results of this study suggest the effects of stigma on caregivers may be mitigated through enhanced social support and self-esteem. Additionally, photovoice is an effective tool to combat community stigma by allowing caregivers to share their narratives.

Representação social sobre a surdez: uma revisão integrativa / Social representation on deafness: an integrative review / Representación social sobre la sordera: una revisíon integradora

O presente estudo teve como objetivo realizar uma revisão integrativa da lite-ratura referente aos estudos científicos que envolvessem a representação social e a surdez. Para isso, realizou-se uma busca nas bases de dados SciELO.org, PePSIC, LILACS, PsycINFO (APA) e Scopus (Elsevier), por meio da plataforma Periódicos CAPES no mês de setembro do ano 2020. Os descritores foram: representação social, surdez, surdo e deficiente auditivo, na língua portuguesa, inglesa e espanhola. Foram analisados 11 artigos e com resultados acerca das populações surda e ouvinte. Nos artigos com pessoas surdas observam--se temáticas sobre identidade, cultura e direitos enquanto cidadãos para dirimirem e modificarem os estereótipos acerca da surdez. As pesquisas com os ouvintes foram realizadas com os familiares e a sociedade de modo geral, tendo como destaque representações baseadas em estereótipos negativos e aspectos limitantes. Ademais, sugerem-se novas produções cientificas que deem continuidade à teoria das representações sociais associadas com outros aspectos que envolvam a surdez e tenham como amostra, a comunidade surda.

The present study aimed to carry out an integrative review of the literature regarding scientific studies involving social representation and deafness. For this, a search was carried out in the databases SciELO.org, PePSIC, LILACS, PsycINFO (APA) and Scopus (Elsevier), through the platform Periodicals CAPES, in September 2020. The descriptors were: representation social, deaf, deaf and hearing impaired, in Portuguese, English and Spanish. Eleven articles were analyzed with abouth the deaf, and hearing populations. In the articles with deaf people, themes about identity, culture and rights as citizens are observed to resolve and modify stereotypes about deafness. Surveys with listeners were carried out with family members and society in general, highli-ghting representations based on negative stereotypes and limiting aspects. Furthermore, new scientific productions are suggested that give continuity to the theory of social representations associated with other aspects that involve deafness and have the deaf community as a sample.

El presente estudio tuvo como objetivo realizar una revisión integradora de la literatura sobre estudios científicos que involucran la representación social y la sordera. Para ello, se realizó una búsqueda en las bases de datos SciELO.org, PePSIC, LILACS, PsycINFO (APA) y Scopus (Elsevier), a través de la plataforma de Publicaciones CAPES, en septiembre de 2020. Los descriptores fueron: representación social, sordo, sordo y con discapacidad auditiva, en portugués, inglés y español. Se analizaron once artículos con resultados sobre la población sorda y auditiva. En los artículos con personas sordas se observan temas sobre identidad, cultura y derechos como ciudadanos para resolver y modificar estereotipos sobre la sordera. Se realizaron encuestas con los oyentes a familiares y sociedad en general, destacando representaciones basadas en estereotipos negativos y aspectos limitantes. Además, se sugieren nuevas producciones científicas que dan continuidad a la teoría de las representaciones sociales asociadas a otros aspectos que involucran la sordera y tienen como muestra a la comunidad sorda.

Participation in leisure activities from the perception of children with disabilities and their families in Brazil.

OBJECTIVE: To understand the perception of children with disabilities and their families regarding factors that interfere with participation in leisure activities in Brazil. METHODS: This qualitative study included 14 focus groups, involving a total of 80 participants (40 children with disabilities and 40 family members). Discus-sions were recorded and transcribed. Coding was based on the International Classification of Functioning Disability and Health, following linking rules. RESULTS: A total of 80 individuals participated in the study. For parents and children the most-cited barriers to participation in leisure activities were relat-ed to environmental factors. For children, the main barriers were the attitudes of their nuclear family, acquaintances, and friends. Access to products and technology for personal mobility were also important obstacles. For them, support from immediate family was both a facilitator and barrier. Other barriers identified by family members were open-space planning services and assets. As facilitators, the atti-tudes and support of people in positions of authority also were reported by this group. CONCLUSION: For parents and children, most disabling barriers were related to environmental factors, such as access to products and technology, support, and attitudes. Some differences in perception were observed between comments from children and parents; for example, regarding barriers due to immediate family. Parents showed greater awareness of barriers and facilitators to participation in leisure activities.

Eficacia de la musicoterapia para reducir la ansiedad dental en niños con discapacidad / Eficacia da musicoterapia para redução da ansiedade dental em crianças com discapacidades / Effectiveness of Music Therapy in reducing dental anxiety in children with disabilities

Objetivo: Evaluar la eficacia de la musicoterapia para la reducción de la ansiedad dental en niños entre 5 a 12 años con discapacidad durante la atención odontológica. Materiales y métodos: Estudio cuasi experimental. Se evaluaron 40 pacientes, divididos aleatoriamente en 2 grupos: grupo de expuestos y no expuestos a musicoterapia. El nivel de ansiedad fue registrado por la escala de imagen facial antes y después de la atención clínica, el comportamiento durante la atención a través de la escala de Frankl y el nivel de ansiedad de los padres a través de la escala modificada de Corah. Se registraron las funciones vitales de ambos grupos antes y después de dicha atención. El análisis de los datos se realizó análisis descriptivo (media ± desviación estándar) y análisis inferencial: Test de T-Student y Chi cuadrado (p<0,05). Resultados: Se encontró que la presión arterial inicial/ final en el grupo expuesto fue (Sístole: 108.75 ± 8.56/ 95.50 ± 6.86, Diástole: 67.75 ± 7.15 / 57.75 ± 6.38), y en el grupo no expuesto (Sístole: 101.75 ± 8.77/ 110.15 ± 13.31, Diástole: 59.20 ± 6.08) respectivamente, y la frecuencia cardiaca inicial/final en el grupo expuesto (72.30 ± 7.18 / 63.95 ± 6.12); y en el grupo no expuesto (66.50 ± 9.88 / 73.90 ± 11.46). Se encontraron diferencias estadísticamente significativas en los valores de la presión arterial (sístole, p<0,001 y diástole, p=0,007) y frecuencia cardiaca final (p=0,001), así como una reducción de los niveles de ansiedad final en el grupo expuesto a musicoterapia (p=0,001).

Objetivo:Avaliar a eficacia da musicoterapia para redução da ansiedade dental em crianças com discapacidades entre 5 a 12 anos durante o atendimento odontológico. Materiais e métodos: Estudo quase experimental. Avaliou-se 40 pacientes divididos aleatoriamente em dois grupos: grupos de expostos e não expostos a musicoterapia. O nível de ansiedade foi registrado pela escala de imagem facial antes e durante o atendimento odontológico, o comportamento durante o atendimento foi através da escala de Frankl e o nível de ansiedade dos padres através da escala modificada de Corah. As funções vitais foram registradas antes e depois do atendimento. O análises de dados foi realizado através análises descritivas (média ± ds) e análises inferenciais: Teste de T-Student e Chi Quadrado (p<0,05). Resultados: A pressão arterial inicial/final no grupo exposto foi (Sístole: 108.75 ± 8.56/95.50 ± 6.86, Diástole: 67.75 ± 7.15/ 57.75 ± 6.38), e no grupo não exposto (Sístole: 101.75 ± 8.77/110.15 ± 13.31, Diástole: 59.20 ± 6.08) respetivamente, e a frequência cardíaca inicial/final no grupo exposto (72.30 ± 7.18/ 63.95 ± 6.12); e no grupo não exposto (66.50 ± 9.88 / 73.90 ± 11.46). Se encontraram diferenças estatisticamente significativas nos valores da pressão arterial (sístole, p=0,000 e diástole, p=0,007) e frequência cardíaca final (p= 0,001), assim como na redução dos níveis de ansiedade final no grupo exposto à musicoterapia (p=0,001). Conclusão: O uso da musicoterapia diminuiu significativamente os níveis da ansiedade durante o atendimento odontológico nos pacientes com discapacidades

Objective: To evaluate the effectiveness of music therapy in reducing dental anxiety in children with disabilities between 5 and 12 years old during dental care. Materials and methods: Quasi-experimental study. 40 patients were evaluated, randomly divided into 2 groups: a group exposed to music therapy and a group not exposed to it. The levels of anxiety were registered using the Facial Image Scale before and after the dental care, the behaviour during dental care using the Frank Scale and the level of anxiety of the parents using the Modified Corah Scale. The vital functions of both groups were registered before and after the dental care. The data analysis was performed using descriptive analysis (media ± standard deviation) and inferential analysis: T- Student test and Chi square (p<0,05). Results: It was found that the initial/final blood pressure in the exposed group was (Systole: 108.75 ± 8.56/ 95.50 ± 6.86, Diastole: 67.75 ± 7.15/ 57.75 ± 6.38), and in the unexposed group (Systole: 101.75 ± 8.77/ 110.15 ± 13.31, Diastole: 59.20 ± 6.08), and the initial/final heart rate in the exposed group was (72.30 ± 7.18/ 63.95 ± 6.12); and in the unexposed group (66.50 ± 9.88/ 73.90 ± 11.46). Statistically significant differences were found in the values of blood pressure (systole, p=0,000 y diastole, p=0,007) and heart rate (p= 0,001), as well as a reduction in the levels of anxiety in the exposed group to music therapy (p=0,001). Conclusion: The use of Music therapy significantly reduces levels of anxiety during dental care in patients with disabilities.

DISABKIDS® in Brazil: advances and future perspectives for the production of scientific knowledge.

OBJECTIVE: to map the Brazilian scientific production related to the stages of the methodological process for the use of DISABKIDS® instruments and/or forms adapted to Brazil. METHOD: scoping review, with searches conducted on10 electronic databases, plus Google Scholar and contacts with researchers, without restriction of period or language. RESULTS: the mapping identified 90 scientific studies involving 46 instruments. Of these, 11 (23.9%) included the elaboration and/or cultural adaptation of the DISABKIDS® instruments to measure the Quality of Life of children or adolescents with chronic conditions and 35 (76.1%) used the Generic Measures and/or Specific Modules for the semantic validation of other instruments. CONCLUSION: this scoping review allowed a comprehensive evaluation of the use of the DISABKIDS® instrument and forms, in relation to the validation of the instrument adapted to Brazil, presenting a positive advance in the scenario with the development of academic/scientific projects in the country, incorporating the method recommended by the literature for the elaboration, cultural adaptation and validation of instruments and for the systematized and standardized recording of the perception and understanding of the target population about the measure of interest, using DISABKIDS® forms adapted for this purpose.

A scoping review of the moral experiences of children with medical complexity in Brazil.

OBJECTIVES: The aim of this review was to identify and summarize how the moral experiences of children with medical complexity are being expressed within the Brazilian health-related literature and discuss research gaps and directions for future research. METHODS: A scoping review was performed using the methodological framework of Arksey and O'Malley and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Systematic searches were conducted on Medline, CINAHL, Scopus, and Embase databases. Articles were included if using qualitative methodologies, having children as participants, and published in Brazil. RESULTS: In total, 6,360 articles were retrieved from databases. Sixteen studies were selected for the analysis. FINAL CONSIDERATIONS: The studies were not primarily focused on children's moral experiences. Yet, the studies demonstrate morally relevant accounts concerning children's capacity to reason and interpret their lived experiences, expressing deep concerns about isolation, suffering, future aspirations, and feelings of normality.

Hearing Aid Use and Auditory Verbal Therapy Improve Voice Quality of Deaf Children.

BACKGROUND: Adequate phonation is self-regulated by auditory feedback. Children with bilateral profound hearing loss (PHL) lack this feedback resulting in abnormal voice. Adequate hearing aid use and auditory-verbal therapy (AVT) may improve voice quality in deaf children. OBJECTIVE: To study whether hearing aid use and AVT approach improve acoustic parameters of voice of children with bilateral PHL. MATERIALS AND METHODS: Nineteen children with bilateral PHL were studied. Age range 2-5 years (X = 53.04 months; SD = 9.54). All children were fitted with hearing aids according to auditory testing and they underwent a 1-year auditory habilitation period using the AVT approach. Acoustic analysis of voice including F0, shimmer, and jitter was performed at the onset and at the end of the auditory habilitation period. Final acoustic data were compared to a matched control group of 19 children, age range 2-5 years (X = 52.85; SD = 9.74) with normal hearing. RESULTS: Mean fundamental frequency (F0) was significantly increased after AVT intervention. Shimmer and jitter significantly (P < 0.05) improved after the intervention period. However, despite the improvements, mean F0 at the end of the intervention period was still significantly (P < 0.05) decreased as compared to controls. Also, mean shimmer and jitter at the end of the habilitation period were still significantly (P < 0.05) higher as compared to controls. CONCLUSIONS: The results of this preliminary study suggest that hearing aid use and auditory habilitation with AVT approach improved acoustic voice parameters of children with PHL. However, acoustic parameters persisted abnormal as compared to matched normal hearing controls. AVT approach and regular hearing aid use seem to be safe and reliable clinical tools for improving voice quality of children with PFL.

Interest of children with unilateral spastic cerebral palsy in bimanual daily activities.

Background: Many bimanual activities are challenging for children with unilateral spastic cerebral palsy (USCP).Aims: To investigate hand use by children with USCP in daily activities of their interest.Material e methods: Sample included twenty children with USCP, aged 8 to 14 years old. Participants identified bimanual activities of their interest and no interest. Children's performance on these activities were videotaped. Videos were coded according to the affected extremity's forms and effectiveness of use, caregiver provision and types of assistance, and child's satisfaction. The relative proportions of each parameter were compared using the signed-rank test, considering the time spent in activities of interest and no interest.Results: We analyzed 116 activities. We found effects of interest in children's satisfaction (p = 0.003) and on the type of assistance (p = 0.03). Specifically, children demonstrated longer periods of satisfaction performing activities of their interest and caregiver physical assistance was provided for longer periods of time in activities of no interest. There were no effects on the other parameters.Conclusions: A model that illustrates the impact of a child's interest on the performance of daily bimanual activities is presented, grounded in our results and in the literature.

Dance Intervention for Mexican Family Caregivers of Children With Developmental Disability: A Pilot Study.

Introduction: There are 7.1 million people living with a disability in Mexico. Of these individuals, 7% are children and adolescents with developmental disabilities. Mexican women caring for children with a developmental disability are at risk of psychological stress, which may be prevented with physical activity such as dance. Therefore, the purpose of this pilot study was to examine (a) the feasibility of implementing the dance intervention, (b) the mothers' satisfaction with the intervention, and (c) the changes in stress level experienced by the mothers on completion of the intervention. Method: A one-group pretest-posttest design was used. The Salsa dance intervention was given in nine 60-minute sessions, twice a week in Veracruz, Mexico. The sample included 14 mothers of children with disabilities. The outcome, stress level, was measured with the validated Questionnaire of Perceived Stress. Feasibility of intervention implementation was maintained by having the interventionist follow the interventionist manual. Satisfaction was assessed by the Satisfaction with Therapy and Therapist Scale. Results: The intervention was feasible as all participants completed the intervention sessions. They reported high satisfaction (100%) with the intervention and interventionist. At posttest, participants showed reduced stress levels (p = .028). Discussion: The dance intervention is promising in reducing women's stress levels and worth further development in order to benefit the Mexican women caring for children with developmental disability and experiencing stress. Nurses can implement the Salsa dance intervention with the Mexican population while improving the clients' retention, outcomes, and overall satisfaction.

Ansiedade de responsáveis por pacientes com deficiência frente ao atendimento odontológico dos seus filhos / Anxiety in care givers of children with disabilities about their dental care

A ansiedade do responsável pode ser um fator determinante na ansiedade infantil durante a prática odontológica, levando a criança a apresentar comportamentos não colaborativos. Objetivou-se identificar a ansiedade dos responsáveis de pacientes com deficiência ­ Grupo 1 (G1) - atendidos na FOUFRJ, diante do tratamento odontológico de seus filhos, sua relação com Traço e Estado de ansiedade e com o comportamento na consulta, comparando com responsáveis de pacientes sem deficiência ­ Grupo 2 (G2). 128 responsáveis (64 do G1 e 64 do G2) responderam a 3 questionários: 2 validados (Escala de Ansiedade Odontológica (DAS) e Inventário de Ansiedade Traço/Estado) e o terceiro criado pela autora para coleta de dados pessoais e relacionados a percepção de ansiedade frente ao atendimento odontológico do filho (Kappa = 0,96). A maioria do G1 (93,79%) e do G2 (90,63%) era do sexo feminino, com média de idade similar. O comportamento negativo foi mais frequente no G1 com 31,2% contra 9,49% no G2 (p=0,002, Qui²). Ansiedade na 1ª consulta foi relatada em 54,7% no G1 e 48,4% no G2, tendo essa persistindo nas consultas posteriores em 20% do G1, no qual teve médias de DAS (p=0,002) e Estado (p=0,001) maiores nos mais ansiosos; e em 19,6% do G2, com maiores média de Estado (p=0,02) nos mais ansiosos. O comportamento ruim não foi relacionado a maiores valores DAS, Traço ou Estado, mas, nos que permanecem ansiosos, 63,6% das crianças tiveram comportamento ruim no G1 contra 15,4% no G2 (p=0,033). Responsáveis por pacientes com e sem deficiência apresentam ansiedade odontológica semelhante, no entanto a presença de um comportamento ruim está relacionada a ansiedade de responsáveis apenas no grupo dos pacientes com deficiência. (AU)

The caregiver's anxiety can be a determining factor in childhood anxiety during dental practice, leading the child to exhibit non-collaborative behaviors. The objective of this study was to identify the anxiety of those caregivers of patients with disabilities - Group 1 (G1) - treated at the School of Dentistry of the Federal University of Rio de Janeiro, about their children's dental treatment, the relationship with Trait and State anxiety, and with the behavior at the appointment, comparing it with caregivers of non-disabled patients - Group 2 (G2). 128 guardians (64 from G1 and 64 from G2) answered three questionnaires: two validated (Dental Anxiety Scale (DAS) and State-Trait Anxiety Inventory) and the third created by the author to collect personal and related data about the perception of anxiety regarding the child's dental care (Kappa = 0.96). The majority of G1 (93.79%) and G2 (90.63%) were female, with a similar mean age. The negative behavior was more frequent in G1 with 31.2% against 9.49% in G2 (p = 0.002, Qui²). Anxiety in the first visit was reported in 54.7% in G1 and 48.4% in G2, persisting in subsequent visits in 20% of G1, in which the mean DAS (p = 0.002) and State (p = 0.001) was higher in the more anxious; and in 19.6% of G2, with the highest mean State (p = 0.02) in the most anxious. The bad behavior was not related to higher DAS, Trait or State values, but in those who remain anxious, 63.6% of the children had a bad behavior in G1 versus 15.4% in G2 (p = 0.033). Caregivers for patients with and without disabilities have similar dental anxiety; however, the presence of a bad behavior is related to the anxiety of the parents of patients with disabilities. (AU)

Tornar-se mãe de uma criança com paralisia cerebral: sentimentos vivenciados / Conviértete en madre de un niño con parálisis cerebral: sentimientos experimentados / Becoming the mother of a child with cerebral palsy: feelings experienced

RESUMO Objetivo: compreender a vivência da mulher ao tornar-se mãe de uma criança com necessidades especiais decorrentes da paralisia cerebral. Metodologia: estudo qualitativo, fenomenológico/hermenêutico, realizado em um município ao norte do Rio Grande do Sul/Brasil, com dez mães/cuidadoras de crianças/adolescentes com paralisia cerebral, entre abril a junho/2015. Para a coleta de informações utilizou-se a entrevista fenomenológica. A interpretação compreendeu abordagem hermenêutica. Resultados: a mãe, ao receber o diagnóstico de paralisia cerebral, ocorre uma reorganização do seu modo de ser-no-mundo para se adaptar à nova situação existencial. E, a partir desse momento, inicia um viver em função do cuidado do filho. Conclusões: o estudo traz a possibilidade de reflexão para os profissionais de saúde a fim de compreender todo o processo vivenciado pela mãe, auxiliando-a nesta nova situação existencial, compreendendo-a nas fases que compõem o processo de adaptação à condição de mãe de uma criança com paralisia cerebral.

RESUMEN Objetivo: comprender la vivencia de la mujer al convertirse en madre de un niño con necesidades especiales derivadas de la parálisis cerebral. Metodología: estudio cualitativo, fenomenológico hermenéutico, realizado en un municipio al norte del estado Rio Grande do Sul, Brasil, con diez madres cuidadoras de niños adolescentes con parálisis cerebral, entre los meses de abril a junio del 2015. Para la recolección de informaciones se utilizó la entrevista fenomenológica. La interpretación comprendió el enfoque hermenéutico. Resultados: la madre al recibir el diagnóstico de parálisis cerebral pasa por una reorganización de su habitual modo de ser en el mundo para adaptarse a la nueva situación existencial. A partir de ese momento, pasa a vivir en función del cuidado del hijo. Conclusiones: este estudio da la posibilidad de reflexión para profesionales de la salud a fin de comprender todo el proceso vivido por la madre, ayudándola en esta nueva situación existencial, comprendida en cada una de las fases que componen el proceso de adaptación a la vida en condición de madre de un niño con parálisis cerebral.

ABSTRACT Objective: to understand the woman's experience of becoming a mother of a child with special needs from cerebral palsy. Methodology: this was a qualitative, phenomenological hermeneutic study carried out in a municipality in the north of the State of Rio Grande do Sul, Brazil, with ten mothers who were caring for children/adolescent with cerebral palsy between April and June 2015. Phenomenological interviews were used to collect information. The interpretation included the hermeneutic approach. Results: the mother upon receiving the diagnosis of cerebral palsy goes through a reorganization of her habitual way of being-in-the-world to adapt herself to the new existential situation. From that moment on, she started to live according to the child's care. Conclusions: This study provides the possibility of reflection for health professionals in order to understand the whole process experienced by the mother, helping her in this new existential situation, understanding her in the phases that make up the process of adaptation to the condition of being the mother of a child with cerebral palsy.

Social support of families with tracheostomized children.

OBJECTIVE: To understand the social support of families with tracheostomized children. METHOD: Qualitative study using the Model of Dimensions of Social Support together with the Family System-Illness model as theoretical frameworks, based on the hybrid model of thematic analysis. Nine families with tracheostomized children were interviewed in an outpatient pediatric otorhinolaryngology department of a public hospital in the inner state of São Paulo. RESULTS: The experience of social support to each phase of the family experience was presented in three themes: "Knowing the need for a tracheostomy", "Performing a tracheostomy" and "Living with a tracheostomy". FINAL CONSIDERATIONS: Understanding how the experience of social support occurs can support assessment and intervention strategies, aiming to meet the demands of the family at each phase of its trajectory, collaborating for a continuous and integral nursing care.

Repercussions on the family from the birth and care of children with multiple disabilities: a qualitative meta-synthesis. / Repercussões do nascimento e do cuidado de crianças com deficiência múltipla na família: uma metassíntese qualitativa.

Multiple disabilities in children, present in various syndromes, involve physical, economic, and social problems and affect the parents of these children and their families. The attempt to learn more about this problem from a qualitative perspective gave rise to the current study's objective, namely to identify and summarize the scientific literature on the repercussions on the family from the birth and care of a child with multiple disabilities. This is a qualitative meta-synthesis of data from Scopus, PsycInfo, and SciELO, using the following descriptors: qualitative; children with disabilities; parent-child relations; family relations; and caregivers. The data were analyzed in three stages according to the method proposed by Noblit & Hare: extraction of first-order concepts; production of second-order concepts; and interpretative synthesis. After the search and eligibility process, eight studies were included, from which emerged six second-order concepts: social restriction; strain on family relations; feelings of affliction; financial instability; changes in the family dynamics; and stress to health and wellbeing. Three syntheses were developed, based on these concepts: disability and ideal parenthood; burden of care; and family redefinitions and adaptations. The studies showed that parents and families experience difficulties resulting from social representations of multiple disabilities and the burden of care (health problems, limitations to other activities, increased financial costs, and changes in the family's routine). They also indicate that these elements invade and can interfere in family and social relations.

A deficiência múltipla em crianças, presente em diversas síndromes, é uma condição que acarreta problemas de ordem física, econômica e social e afeta os pais dessas crianças e suas famílias. O anseio de conhecer melhor essa problemática, sob a perspectiva da análise qualitativa, deu origem ao objetivo deste estudo, que é de identificar e sintetizar o que a literatura científica aborda sobre as repercussões do nascimento e do cuidado de um filho com deficiência múltipla na família. Trata-se de uma metassíntese qualitativa, realizada nas bases de dados Scopus, PsycInfo e SciELO, utilizando-se os descritores: qualitativo; crianças com deficiência; relações pais-filhos; relações familiares; e cuidadores. Os dados foram analisados em três etapas, segundo o método adotado por Noblit & Hare: extração de conceitos de primeira ordem; produção de conceitos de segunda ordem; e síntese interpretativa. Depois do processo de busca e elegibilidade, oito estudos foram incluídos; desses, emergiram seis conceitos de segunda ordem: restrição social; desgaste nas relações familiares; sentimentos que afligem; instabilidade financeira; mudança na dinâmica familiar; e estresse na saúde e no bem-estar. Com base nesses conceitos, elaboraram-se três sínteses: deficiência e parentalidade ideal; o ônus do cuidado; e (re)ssignificações e adaptações da família. Os estudos apontaram que os pais e a família passam por dificuldades advindas das representações sobre a deficiência múltipla e dos encargos do cuidado (problemas de saúde, limitação para outras atividades, aumento dos custos financeiros, mudança de rotina). Indicam, também, que esses elementos penetram e podem interferir nas relações familiares e sociais.

La discapacidad múltiple en niños, presente en diversos síndromes, es una condición que acarrea problemas de orden físico, económico y social que afectan a los padres de esos niños y sus familias. Con el fin de conocer mejor esta problemática, desde la perspectiva del análisis cualitativo, se decidió realizar este estudio, que identifica y sintetiza lo que la literatura científica aborda acerca de las repercusiones del nacimiento y del cuidado de un hijo con discapacidad múltiple en la familia. Se trata de una metasíntesis cualitativa, realizada en las bases de datos Scopus, PsycInfo y SciELO, utilizando los descriptores: cualitativo; niños con discapacidad; relaciones padres-hijos; relaciones familiares; y cuidadores. Los datos se analizaron en tres etapas, según el método adoptado por Noblit & Hare: extracción de conceptos de primer orden; producción de conceptos de segundo orden; y síntesis interpretativa. Después del proceso de búsqueda y elegibilidad, se incluyeron ocho estudios, de estos, surgieron seis conceptos de segundo orden: restricción social; desgaste en las relaciones familiares; sentimientos que afligen; inestabilidad financiera; cambio en la dinámica familiar; y estrés en la salud y bienestar. En base a estos conceptos, se elaboraron tres síntesis: discapacidad y parentalidad ideal; el coste del cuidado; y (re)significaciones y adaptaciones de la familia. Los estudios señalaron que los padres y la familia pasan por dificultades procedentes de las representaciones sobre la discapacidad múltiple y de la responsabilidad del cuidado (problemas de salud, limitación para otras actividades, aumento de los costes financieros, cambio de rutina). Muestran, también, que estos elementos irrumpen y pueden interferir en las relaciones familiares y sociales.

Traditional Bullying and Discriminatory Bullying Around Special Educational Needs: Psychometric Properties of Two Instruments to Measure It.

Two important challenges in research on bullying are to have reliable tools to measure traditional bullying and discriminatory bullying related to special educational needs (SEN), and to learn more about their prevalence. We present the validations of two instruments to measure bullying (European Bullying Intervention Project Questionnaire, EBIPQ) and discriminatory bullying with respect to SEN (EBIPQ⁻Special Education Needs Discrimination version, henceforth EBIPQ-SEND). A total of 17,309 teenagers from Ecuador took part in the study (M = 14.76, SD = 1.65; 49.9% male). The item response theory analyses evidenced accuracy and quality of the measures. The confirmatory factor analyses of the EBIPQ and the EBIPQ-SEND revealed the same two-factor structure-aggression and victimization-regardless of gender, showing optimal fit indexes. We present the results of the prevalence according to the roles of participation in traditional bullying and discriminatory bullying around SEN. Significant gender and age differences were observed for involvement in both phenomena. We also discuss the advantages of applying the EBIPQ and the EBIPQ-SEND to evaluate and diagnose harassment and discriminatory harassment around SEN.

Advocacy care on HIV disclosure to children.

Children with HIV are dependent on taking continuous medication and care, and family preparation is required when disclosing HIV. This study aimed to unveil families' experiences with HIV disclosure to children under 13 years old. Eight family members who have disclosed HIV to seropositive children were interviewed in-depth and individually. The fieldwork took place at a public paediatric outpatient hospital in Rio de Janeiro. The results showed that the family members' discourse highlighted two ways of knowing their own condition and disclosing the condition of the children with HIV. First, they needed to address the communication of bad news and discover their own HIV status through their children's disease. Second, the disclosure was a process constituted by four stages: preparing for disclosure, identifying the time, deciding how and where to tell, and instilling silence after disclosure. They also recognized that nurses had a role in the process as part of an interprofessional team. Nurses can develop advocacy care and empower family members in the preparation of safe HIV disclosure. By systematizing and institutionalizing the care advocacy process, nurses may enable caretakers and children to participate in their therapeutic management, improving adherence to the treatment and self-care with autonomy.