[Phenomenological considerations regarding the self-perception of children/adolescents living with siblings with disabilities]. / Considerações fenomenológicas sobre a percepção de si da criança/adolescente convivendo com irmão com deficiência.

The scope of this article was to understand the self-perception of children/adolescents who live with siblings with disabilities. It involved qualitative research, with a hermeneutic-phenomenological approach, with 20 children and adolescents who live with a disabled sibling from a municipality in the state of Rio Grande do Sul/Brazil. Phenomenological interviews, field diaries and hermeneutic interpretations were used. There were gaps in care, need for attention and understanding on the part of the family, due to the attention given to the disabled sibling. Also, the fear and anguish of the death of the grandparents, the death of the disabled sibling, the nostalgia of the grandparents after their death. It was shown that these children/adolescents live together and question the birth and existence of the sibling. By shining a light on the child/adolescent's life experience, gaps and weaknesses in the relationship with parents, in health care, in situations of vulnerabilities experienced by the child/adolescent and family were revealed. Thus, attention needs to be devoted to this population, considering that they live with siblings with disabilities, and have several vulnerabilities that need to be discussed, aiming at developing inclusive and efficient care strategies.

O objetivo deste artigo é compreender a percepção de si de crianças/adolescentes que convivem com o irmão com deficiência. Pesquisa qualitativa, com abordagem hermenêutico-fenomenológica e participação de 20 crianças e adolescentes que convivem com o irmão com deficiência em um município do estado do Rio Grande do Sul, Brasil. Utilizou-se entrevista fenomenológica, diário de campo e interpretação hermenêutica. Evidenciaram-se lacunas de cuidado, necessidade de atenção, compreensão por parte da família, visto a atenção ser ao irmão com deficiência. O medo e a angústia da morte dos avós, da morte do irmão com deficiência, a saudade dos avós após sua morte. Percebe-se que essas crianças/adolescentes convivem e questionam o nascimento e a existência do irmão. Desvelou-se, ao dar luz ao mundo vivido da criança/adolescente, lacunas e fragilidades na relação com os pais, na atenção à saúde e nas situações de vulnerabilidades vivenciadas pela criança/adolescente e a família. Dessa forma, é necessário atenção a essa população, considerando que convivem com irmãos com deficiência e apresentam diversas vulnerabilidades que precisam ser discutidas, visando elaborações de estratégias de cuidado inclusivas e eficientes.

"He is normal": phenomenological considerations of child/adolescent's perception of the disabled sibling.

OBJECTIVE: To understand the child/adolescent's perception of the disabled sibling. METHOD: Qualitative research, with a phenomenological approach, conducted between 2018 and 2019, in a municipality in the south of Brazil, with 20 children/adolescents who are siblings of people with disabilities, through a phenomenological interview. Respecting ethical precepts, hermeneutics was used for interpretation. RESULTS: The child/adolescent perceives his/her disabled sibling as a normal person, given his/her behavior, way of being and intellectual capacity. Still, it understands him as a special being, who has limitations regarding learning, but does not see him as different, thus, unlinks the idea of disability associated with the disease/abnormality. FINAL CONSIDERATIONS: The perception of the disabled sibling occurs within the perception of normality. The child identifies his sibling's lower learning capacitor a way that is unique to him, a fact that does not condition him to be seen as abnormal, defining his being-in-the-world as a special way of existing.

Child/adolescent caring for the disabled sibling in the family world.

OBJECTIVE: To understand the meaning for the child/adolescent of participating in the care of the disabled sibling. METHOD: Research in the light of the Heideggerian phenomenological approach, carried out in the northern region of Rio Grande do Sul - Brazil. Twenty children/adolescents who lived with their disabled sibling participated. The information was collected through phenomenological interviews, interpreted in the light of hermeneutics from Paul Ricoeur. RESULTS: The child/adolescent helps the family in caring for the disabled sibling, in feeding, bathing, dressing, among other activities, at sometimes there is excessive responsibility of the child/adolescent for the care of the sibling. FINAL CONSIDERATIONS: The inclusion of the child/adolescent who lives with a disabled sibling and their families in the planning and implementation of health care activities is essential. It stands out as a research contribution to the qualification of the practice of health professionals, especially the nurse in the scope of care for the child/adolescent who experience this phenomenon.

The family's adaptation process to their child's hospitalization in an Intensive Care Unit. / O processo de adaptação familiar à hospitalização infantil em Unidade de Terapia Intensiva.

OBJECTIVE: To learn about the adaptation process of family members when experiencing their child's hospitalization in an Intensive Care Unit. METHOD: A qualitative, descriptive and exploratory study conducted at the Pediatrics Unit with family members of children from the Pediatric Intensive Care Unit. The thematic analysis technique was used. RESULTS: Thirteen (13) family members, 12 mothers and one father participated. The following categories emerged from the results: Family impact on children's hospitalization in a Pediatric Intensive Care Unit and Mechanisms for adapting family members to hospitalization in a Pediatric Intensive Care Unit. CONCLUSION: The mechanisms adopted by the family in the process of adapting the child to admission to the Pediatric Intensive Care Unit were: positive thinking, understanding the treatment and the operation of the unit. Health professionals can offer strategies to the family in order to make hospitalization less traumatic, making it possible to share experiences and expand the knowledge of those involved.

Interaction betwenn family and child/adolescent with hearing deficiency. / Interação entre a família e a criança/adolescente com deficiência auditiva.

PURPOSE: to know the family interaction with the hearing impaired child/adolescent. METHODS: descriptive and exploratory qualitative research developed at a Special School in Southern Brazil. Participants were 10 primary caregivers of deaf children/adolescents between 10 and 19 years old. The collection took place in November 2017, through semi-structured interviews containing questions about the communication process of deaf children/adolescents with their families. The information was analyzed through thematic analysis. The study was submitted and approved by the Ethics Committee under opinion number 2.333.560. RESULTS: as the main theme of the study "Interaction between the family and the child/adolescent with hearing impairment", it addresses two sub-themes: potentialities and weaknesses in the communication of the family with the child/adolescent with hearing impairment and learning in the care of the child/adolescent with hearing impairment. CONCLUSION: it was identified that the interaction of the deaf with the family and society is impaired by people's lack of knowledge about the deaf community and the Brazilian Sign Language, which raises concern in caregivers who often overprotect the child/adolescent which may limit the full development of their skills and autonomy.

OBJETIVO: conhecer como ocorre a interação da família com a criança/adolescente com deficiência auditiva. MÉTODO: pesquisa qualitativa de caráter descritivo e exploratório desenvolvida em uma escola especial no Sul do Brasil. Os participantes foram 10 cuidadores principais de crianças/adolescentes surdas entre 10 e 19 anos. A coleta ocorreu no mês de novembro de 2017, por meio de entrevista semiestruturada contendo questões acerca do processo de comunicação de crianças/adolescentes surdos com suas famílias. As informações foram analisadas por meio de análise temática. O estudo foi encaminhado e aprovado pelo Comitê de Ética sob o parecer número 2.333.560. RESULTADOS: desvelou-se como temática principal do estudo "Interação entre a família e a criança/adolescente com deficiência auditiva", que contempla dois subtemas: potencialidades e fragilidades na comunicação da família com a criança/adolescente com deficiência auditiva e aprendendo no cuidado da criança/adolescente com deficiência auditiva. CONCLUSÃO: identificou-se que a interação do surdo com a família e a sociedade é prejudicada pelo desconhecimento das pessoas acerca da comunidade surda e da Língua Brasileira de Sinais, o que gera preocupação nos cuidadores que, muitas vezes, superprotegem a criança/adolescente, podendo limitar o pleno desenvolvimento de suas habilidades e autonomia.

[Children with special needs: counterpoints between law and reality]. / Criança portadora de necessidades especiais: contrapontos entre a legislação e a realidade.

This study is as theoretical and philosophical reflection and it aims to confront the Brazilian legislation (which is about children who have special needs) with the daily practice Although children's rights have been legalized in 1990 by Statute for Children and Teenagers, we can daily see that there is a gap between what the law guarantees and what is performed in practice. It is necessary to put this legislation into practice so that it is possible to break off with a historical trajectory of prejudice which is imposed against these children. However in order to reach such practicality it is essential that families of children with special needs know their rights in order to exercise their citizenship and enjoy a better quality of life According to the available literature, reality can be changed through the exercise of children and family citizenship and this fact makes them aware of their rights.

[Perceptions of nurses about leadership]. / As percepções dos enfermeiros acerca da liderança.

This study aimed at ascertaining the perceptions of nurses facing the use of managerial leadership as a tool in their work process. This was a qualitative study of descriptive and exploratory type, conducted with eleven nurses from a large hospital in the southern region of Rio Grande do Sul, Brazil, during the months of February and March 2008. For data collection were used semi-structured interviews and focus group. The content analysis was chosen as a technique for processing the data, resulting in two categories: meanings attributed to the leadership and authority versus authoritarianism. It was noticed that even the leadership offering advantages in nursing work, are still great the difficulties to understand it and, especially, to put it into practice, making it necessary to create programs and strategies to improve the performance of the leadership as a nurses managerial instrument.

[Institutional characteristics that interfere in the leadership of nurses]. / Características institucionais que interferem na liderança do enfermeiro.

The development of this study aimed at knowing the institutional characteristics that interfere with leadership of the nurse. This is a qualitative survey of descriptive and exploratory type, held in a large hospital located in the southern Rio Grande do Sul, Brazil, during the months of February and March 2008, in which participated 11 nurses. For the collection of data, we used semistructured interview. It was opted for the analysis of content as a technique for data processing in which emerged a category concerning institutional character that consists of six subcategories: remuneration, material resources, autonomy and institutional support, rotation, devaluation of the profession, and lack of incentive to develop leaders. It was identified that the little incentive to the improvement of the nurses front to the leadership is one institutional problem that can be minimized through the permanent education and the creation and implementation of programs of development for leaders in nursing.

[Mothers experiencing the diagnosis of cerebral palsy in their children]. / Mães vivenciando o diagnóstico da paralisia cerebral em seus filhos.

The study aimed at understanding how the mothers of children with special needs, due to the diagnosis of cerebral palsy, experienced the disclosure of the diagnosis. An exploratory-descriptive research was held from a qualitative approach. Data were collected and recorded through semi-structured interviews with six mothers of children with cerebral palsy that attended the institution of the study and analyzed according to Roy's Adaptation Model. The results pointed out that the main difficulties faced by the mothers were related to the understanding and acceptance of the situation by the family and the lack of preparation of the health professionals in revealing the diagnosis of special needs of their children.

Institutionalized child care experiences: the hidden side of work.

OBJECTIVE: To know the caregiver's perception about the work/care with the institutionalized child. METHODS: Qualitative research that used the Theory of Attachment and Symbolic Interactionism as theoretical references and the Grounded Theory as a methodological reference. Data was collected through semi-structured interviews with 15 caregivers of a child sheltering institution, in the year 2015. The analysis was performed from the open coding and categorization. RESULTS: Care work aims to meet the needs of institutionalized children, focusing on food, hygiene and education. In addition, it is little recognized, which generates a feeling of devaluation in caregivers. CONCLUSIONS: Continued qualification and support to the caregivers is indispensable for elaborating more effective and integral work/care strategies.

Support systems in the pediatric intensive therapy unit: family perspective.

OBJECTIVE: to identify and to analyze the support systems used by family members for the adaptation process to the child's hospitalization in the intensive care unit. METHOD: qualitative research, conducted in a hospital located in the Southern Brazil. Data were collected between June and July 2017, through semi-structured interviews with family members of hospitalized children. The adaptation model and thematic analysis were used for data processing. RESULTS: four themes emerged: family and friends as a support system; the family members of other hospitalized children as a support system; spirituality as a support system; health team as a support system. FINAL CONSIDERATIONS: identifying the support systems used in the process of family adaptation and their manifestations of interdependence was possible. The need of the nurses to intensify the listening to strengthen the support system of the family members of the children hospitalized in the unit studied.

[Work-related musculoskeletal disorders and their association with occupational nursing]. / Doenças osteomusculares relacionadas ao trabalho (DORT) e sua associação com a enfermagem ocupacional.

Work-related musculoskeletal diseases (MSD) are disorders in the musculoskeletal structures caused by chronic occupational processes. The objective of this study was to get to know scientific papers on MSD related to the nursing profession. A bibliographic research of the last ten years was conducted at Health Virtual Library using the main data bases. Twenty-one summaries were found. Among them, thirteen were selected because they specifically focused on the subject. Three main areas were identified: occupational health nurses in relation to MSDs--their importance in health prevention and promotion; Ergonomics as MSDs prevention method: performed as changes on work consider risk factors; Vulnerability of Nursing staff to MSDs--predisposing factors to disease caused by inappropriate working conditions. The conclusion was that an occupational and ergonomic health service is important to prevent MSDs, especially among the nursing staff.

Vulnerabilidades vivenciadas por familiares/ cuidadores de crianças com condição crônica / Vulnerabilities experienced by family members/caregivers of children with chronic conditions

Resumo Objetivou-se conhecer as vulnerabilidades vivenciadas pelos familiares/cuidadores de crianças com condição crônica. Pesquisa qualitativa sustentada pelo referencial teórico do filósofo francês Roselló, da qual participaram 15 familiares/cuidadores de crianças com condições crônicas. As informações foram coletadas nos anos de 2018 e 2019 e submetidas à análise temática. Os resultados são apresentados em três temas: A doença como expressão da vulnerabilidade do ser criança; A doença crônica da criança como condição de vulnerabilidade do familiar/cuidador; O suporte das redes de apoio: potencialidades e vulnerabilidades no cotidiano da criança com condição crônica e do familiar/cuidador. Conhecer os componentes da vulnerabilidade vivenciados pelas famílias das crianças com condição crônica é algo complexo, pois exige refletir sobre as situações que essas famílias enfrentam, tendo em vista suas peculiaridades, sentimentos, organização familiar e acessibilidade aos serviços de saúde. Portanto, o conhecimento acerca do contexto em que essas famílias estão inseridas é fundamental para que se possa estabelecer um planejamento adequado das ações de saúde voltadas à promoção de seu bem-estar.

Abstract The objective was to know the vulnerabilities experienced by family members/caregivers of children with a chronic. Qualitative research supported by the theoretical framework of the French philosopher Roselló Un which 15 family members/caregivers of children with chronic conditions participated in the study. The information was collected in the years 2018 and 2019 and submitted to thematic analysis. The results are presented in three themes: The disease as an expression of the vulnerability of being a child; The child's chronic illness as a condition of vulnerability of the family member/caregiver; The support of support networks: potentialities and vulnerabilities in the daily life of children with chronic conditions and family members/caregivers. Knowing the components of vulnerability experienced by the families of children with chronic conditions is complex, as it requires analyzing and reflecting on the situations these families face, considering their peculiarities, feelings, family organization and the accessibility they have to health services. Therefore, knowledge about the context in which these families are inserted is essential to establish an adequate planning of health actions aimed at promoting their well-being.

Formation and disruption of bonds between caregivers and institutionalized children.

OBJECTIVE: to understand the perspective of caregivers about the formation and disruption of bonds with institutionalized children. METHOD: a qualitative research that used as a theoretical framework the Attachment Theory and the Symbolic Interactionism, and the Grounded Theory as methodological framework. Participating in the study were 15 female caregivers of children aged zero to three years, from a child care institution in the south of Brazil, from April to July 2015. RESULTS: three categories were elaborated: "Experiencing the formation of bond and attachment"; "Disrupting with the established bonds and detaching"; "Learning how to work with formation and disruption of bond". FINAL CONSIDERATIONS: we need to think of ways to minimize the negative effects formation and disruption of bonds. In this sense, active listening and the offer of psychological support favor the sharing of experiences and the emotional strengthening of the female caregivers.

Perfil de crianças de 0 a 18 meses vacinadas em um centro de especialidades / Profile of children aged 0 to 18 months vaccinated in a speciality center / Perfil de los niños de 0 a 18 meses vacunados en un centro de especialidades

Objetivo: descrever o perfil das crianças de 0 a 18 meses que utilizam um serviço de vacinação. Método: Trata-se de uma pesquisa descritiva com abordagem quantitativa, realizada com 234 pais e responsáveis de crianças de 0 a 18 meses que utilizaram o serviço de vacinação de um Centro de Especialidades, no período de julho a setembro de 2019. Os dados foram analisados no programa Stata versão 15.0. Resultados: os formulários foram, em sua maioria, respondidos pelas mães e a média de idade das crianças foi 7,9 meses. Conclusão: apesar da maior parte das carteiras vacinais estarem atualizadas de acordo com a idade, a temática em questão, pela relevância que possui para as políticas públicas de saúde, deve seguir sendo monitorada, visando ampliar o acesso às vacinas e também a abrangência de crianças vacinadas (AU).

Objective: to describe the profile of children aged 0 to 18 month who use a vaccination service. Method: this is a descriptive research with a quantitative approach, carried out with 234 parents and guardians of children aged 0 to 18 months who used the vaccination servisse of a Speciality Center, from Jluy to September 2019. The data were analysed in the Stara program version 15.0. Results: the forms were mostly answered by the mother and the children's avarage age was 7.0 months. Conclusion: despite the fact that most vaccine portfolios are up-to-date according to age, the theme in question, due to its relevance to public health policies, should continue to be monitored, aiming to expand access to vaccines and also the reach of vaccinated children (AU).

Objetivo: describir el perfil de los niños que utilizan un servicio de vacunación. Método: se trata de una investigación descriptiva con enfoque cuantitativo, realizada con 234 padres y tutores de niños de 0 a 18 meses que utilizaron el servicio de vacunación de un Centro de Especialidades, de julio a septiembre de 2019. Los datos fueran analizados en el Versión 15.0 del programa Stata. Resultados: los formularios fueran respondidos mayoritariamente por las madres y la edad promedio de los niños fue de 7,9 meses. Conclusión: a pesar de que la mayoría de los portafolios de vacunas de actualizan por edad, el tema en cuestión, por su relevancia para las políticas de salud pública, debe seguir siendo monitoreado, con el objetivo de ampliar el acceso a las vacunas y también el alcance de los niños vacunados (AU).

Trabalho da equipe de enfermagem no serviço de urgência e emergência pediátrica: revisão integra-tiva / Work of the nursing team in the pediatric urgency and emergency service: integrative review / Trabajo del equipo de enfermería en el servicio de urgencias y emergencias pediátricas: revisión inte-gradora

Objetivo: conhecer a produção científica sobre o trabalho da equipe de enfermagem no serviço de urgência e emergência pediátrica. Método: revisão integrativa cujos os dados foram das publicações de 2009 a 2019, totalizando 10 artigos que atenderam os critérios propostos nas buscas. Resultados: foram compilados em quatro categorias temáticas: A equipe de enfermagem no trabalho na urgência e emergência pediátrica; Segurança da assistência de enfermagem na urgência e emergência pediátrica; Perspectiva dos acompanhantes sobre a assistência de enfermagem na urgência e emergência pediátrica; Dificuldades e estratégias de enfrentamento no trabalho da equipe de enfermagem na urgência e emergência pediátrica. Conclusão: identificou-se uma lacuna em publicações que buscavam conhecer a perspectiva dos profissionais acerca do seu trabalho cotidiano, sendo este um tema potencial para a realização de estudos, visando melhorar a qualidade da assistência e o suporte a essa população (AU).

Objective: to know the scientific production on the work of the nursing team in the pediatric urgency and emergency service. Method: integrative review whose data were from publications from 2009 to 2019, totaling 10 articles that met the criteria proposed in the searches. Results: were compiled into four thematic categories: The nursing team at work in pediatric urgency and emergency; Safety of nursing care in pediatric urgency and emergency; Companions' perspective on nursing care in the pediatric urgency and emergency; Difficulties and coping strategies in the work of the nursing team in pediatric urgency and emergency. Conclusion: a gap was identified in the publications that sought to know the perspective of professionals about their daily work, which is a potential theme for carrying out studies, aiming to improve the quality of care and support for this population (AU).

Objetivo: conocer la producción científica sobre el trabajo del equipo de enfermería en el servicio de urgencia y emergencia pediátrica. Método: revisión integradora cuyos datos fueron de publicaciones de 2009 a 2019, totalizando 10 artículos que cumplieron con los criterios propuestos en las búsquedas. Resultados: fueron compilados en cuatro categorías temáticas: El equipo de enfermería en el trabajo en urgencias y emergencias pediátricas; Seguridad del cuidado de enfermería en urgencias y emergencias pediátricas; Perspectiva de los acompañantes sobre el cuidado de enfermería en la urgencia y emergencia pediátrica; Dificultades y estrategias de afrontamiento en el trabajo del equipo de enfermería en urgencias y emergencias pediátricas. Conclusión: se identificó una brecha en publicaciones que buscaban conocer la perspectiva de los profesionales sobre su trabajo diario, siendo este un tema potencial para realizar estudios, con el objetivo de mejorar la calidad de la atención y el apoyo a esta población (AU).

Caracterização e concepções de saúde de estudantes universitários que vivem em uma residência estudantil / Caracterización y concepciones de salud de estudiantes universitarios que viven en una residencia de estudiantes / Characterization and health conceptions of university students who live in a student residence

Objetivo:identificar o perfil e a concepção de saúde dos estudantes universitários residentes na casa do estudante. Método: estudo qualitativo do qual participaram 20 estudantes de uma residência universitária, sendo os dados analisados através da análise temática. Resultados: os estudantes apresentaram seus conceitos de saúde, adoecimento, cuidados adotados e acesso a serviços de saúde, havendo uma pluralidade nesses conceitos, sendo que cada um compreende de uma maneira diferente. Os universitários referiram já terem vivenciado o adoecimento em algum período do ano, devido ao estresse gerado pela demanda excessiva ou pelas características climáticas. Assim, procuraram práticas alternativas e automedicação para auxiliar no processo do cuidado. Conclusões:é necessário refletir sobre as demandas dos universitários, visando melhorar o atendimento e o acolhimento desses, para que possam atingir seu potencial máximo na vida acadêmica.

Objective: to identify the health profile and conception of university students residing in the student's home. Method: qualitative study in which 20 students from a university residence participated, the data being analyzed through thematic analysis. Results: the students presented their concepts of health, illness, care adopted and access to health services, with a plurality of these concepts, and each one understands it in a different way. The university students reported having already experienced illness at some time of the year, due to the stress generated by excessive demand or weather conditions. Thus, they sought alternative practices and self-medication to assist in the care process. Conclusions: it is necessary to reflect on the demands of university students, aiming to improve their care and reception, so that they can reach their maximum potential in academic life.

Objetivo: identificar el perfil y la concepción de salud de los universitarios residentes en el domicilio del estudiante. Método: estudio cualitativo en el que participaron 20 estudiantes de una residencia universitaria, y los datos fueron analizados a través del análisis temático. Resultados: los estudiantes presentaron sus conceptos de salud, enfermedad, cuidados adoptados y acceso a los servicios de salud, con una pluralidad de estos conceptos, y cada uno lo entiende de forma diferente. Los universitarios relataron haber padecido ya la enfermedad en alguna época del año, debido al estrés generado por el exceso de demanda o por las características climáticas. Por lo tanto, buscaron prácticas alternativas y de automedicación para ayudar en el proceso de atención. Conclusiones: es necesario reflexionar sobre las demandas de los estudiantes universitarios, con el objetivo de mejorar su atención y acogida, para que puedan alcanzar su máximo potencial en la vida académica.

Considerações fenomenológicas sobre a percepção de si da criança/adolescente convivendo com irmão com deficiência / Phenomenological considerations regarding the self-perception of children/adolescents living with siblings with disabilities

Resumo O objetivo deste artigo é compreender a percepção de si de crianças/adolescentes que convivem com o irmão com deficiência. Pesquisa qualitativa, com abordagem hermenêutico-fenomenológica e participação de 20 crianças e adolescentes que convivem com o irmão com deficiência em um município do estado do Rio Grande do Sul, Brasil. Utilizou-se entrevista fenomenológica, diário de campo e interpretação hermenêutica. Evidenciaram-se lacunas de cuidado, necessidade de atenção, compreensão por parte da família, visto a atenção ser ao irmão com deficiência. O medo e a angústia da morte dos avós, da morte do irmão com deficiência, a saudade dos avós após sua morte. Percebe-se que essas crianças/adolescentes convivem e questionam o nascimento e a existência do irmão. Desvelou-se, ao dar luz ao mundo vivido da criança/adolescente, lacunas e fragilidades na relação com os pais, na atenção à saúde e nas situações de vulnerabilidades vivenciadas pela criança/adolescente e a família. Dessa forma, é necessário atenção a essa população, considerando que convivem com irmãos com deficiência e apresentam diversas vulnerabilidades que precisam ser discutidas, visando elaborações de estratégias de cuidado inclusivas e eficientes.

Abstract The scope of this article was to understand the self-perception of children/adolescents who live with siblings with disabilities. It involved qualitative research, with a hermeneutic-phenomenological approach, with 20 children and adolescents who live with a disabled sibling from a municipality in the state of Rio Grande do Sul/Brazil. Phenomenological interviews, field diaries and hermeneutic interpretations were used. There were gaps in care, need for attention and understanding on the part of the family, due to the attention given to the disabled sibling. Also, the fear and anguish of the death of the grandparents, the death of the disabled sibling, the nostalgia of the grandparents after their death. It was shown that these children/adolescents live together and question the birth and existence of the sibling. By shining a light on the child/adolescent's life experience, gaps and weaknesses in the relationship with parents, in health care, in situations of vulnerabilities experienced by the child/adolescent and family were revealed. Thus, attention needs to be devoted to this population, considering that they live with siblings with disabilities, and have several vulnerabilities that need to be discussed, aiming at developing inclusive and efficient care strategies.

Situações de vulnerabilidade vivenciadas por familiares na hospitalização de crianças com condição crónica / Situations of vulnerability experienced by family members during the hospitalization of chronically ill children / Situaciones de vulnerabilidad vividas por los familiares en la hospitalización de niños con enfermedades crónicas

Resumo Enquadramento: A vulnerabilidade é classificada como uma tríade de elementos individual, social e programático. Objetivo: Conhecer situações de vulnerabilidade individual, social e programática vivenciadas por familiares durante a hospitalização de crianças com condição crónica. Metodologia: Pesquisa qualitativa desenvolvida com 10 familiares de crianças com condição crónica que estiveram hospitalizadas, utilizando-se análise temática. As informações foram colhidas de junho a agosto de 2018, por meio de observação simples, entrevista semiestruturada e diário de campo. Resultados: Identificou-se como vulnerabilidades individual, a sobrecarga do familiar; social, a acomodação dos familiares; e programática, a distância geográfica de seu domicílio do hospital. Como condições que minimizaram as vulnerabilidades evidenciou-se o atendimento dos serviços de saúde e os cuidados que receberam dos profissionais. Conclusão: Conhecer as situações de vulnerabilidade vivenciadas pelas famílias possibilita implementar estratégias de cuidado mais inclusivas e efetivas, visando ampliar o acesso aos serviços de saúde e aos profissionais, oferecer acolhimento às necessidades e incentivar a participação da família e a criação de redes de apoio.

Abstract Background: Vulnerability is classified as a triad consisting of individual, social and programmatic elements. Objective: To understand the situations of individual, social, and programmatic vulnerabilities experienced by family members during the hospitalization of their chronically ill children. Methodology: This is a qualitative research study using thematic analysis and conducted with ten family members of hospitalized chronically ill children. Data were collected between June and August 2018 through simple observation, semi-structured interviews, and a field diary. Results: This study identified family members' caregiver burden as the individual vulnerability, family members' accommodations as the social vulnerability, and the geographic distance between families' homes and the hospital as the programmatic vulnerability. Health care services and health professionals' care delivery were identified as conditions minimizing vulnerabilities. Conclusion: Understanding the situations of vulnerability experienced by families allows implementing more inclusive and efficient care strategies to expand access to health services and professionals, respond to families' needs, encourage family participation, and create support networks.

Resumen Marco contextual: La vulnerabilidad se clasifica como una tríada de elementos individuales, sociales y programáticos. Objetivo: Conocer las situaciones de vulnerabilidad individual, social y programática que viven los familiares durante la hospitalización de los niños con enfermedades crónicas. Metodología: Investigación cualitativa desarrollada con 10 familiares de niños con enfermedades crónicas que estuvieron hospitalizados, para lo cual se utilizó el análisis temático. La información se recopiló de junio a agosto de 2018, a través de la observación simple, la entrevista semiestructurada y el diario de campo. Resultados: La vulnerabilidad individual se identificó como la sobrecarga del familiar; la vulnerabilidad social como el alojamiento de los familiares, y la vulnerabilidad programática como la distancia geográfica del hogar al hospital. Como condiciones que minimizaron las vulnerabilidades, se constataron los servicios sanitarios y la atención recibida por parte de los profesionales. Conclusión: Conocer las situaciones de vulnerabilidad que viven las familias permite poner en marcha estrategias de atención más inclusivas y eficaces, con el fin de aumentar el acceso a los servicios y a los profesionales sanitarios, satisfacer las necesidades y fomentar la participación de las familias y la creación de redes de apoyo.

Situações de vulnerabilidade percebidas pela família na inclusão escolar da criança com condição crônica / Situation of vulnerability perceived by the family in school inclusion of children with chronic condition / Situaciones de vulnerabilidad percebidas por la familia en la inclusión escolar del niño con condición crónica

Objetivo: Conhecer as situações de vulnerabilidade percebidas pelo cuidador/familiar na inclusão escolar da criança com condição crônica. Métodos: Estudo qualitativo realizado por meio de entrevista com 10 familiares/cuidadores de crianças com condição crônica, nos meses de junho a agosto de 2018em um município do sul do Brasil. Para analisar as informações utilizou-se a análise temática. Resultados:Constataram-se diversas situações de vulnerabilidades vivenciadas pelas famílias, ao inserirem a criança na escola, tais como a realização de procedimentos e medicações à criança pelos profissionais da educação, a merenda oferecida na escola, as dificuldades vivenciadas pela criança frente às condições crônicas de saúde. Considerações finais: É necessário que os profissionais de saúde e de educação tenham um olhar atento às famílias/cuidadores e às crianças com condição crônica, visando conhecer as situações de vulnerabilidade vivenciadas e favorecendo a constituição de redes de apoio para suporte na melhoria da qualidade de vida.

Objective: Knowing the situations of vulnerability perceived by the caregiver/family member in the school inclusion of children with a chronic condition.Method: Qualitative study carried out through interviews with 10 family members/caregivers of children with a chronic condition, from June to August 2018 in a municipality in southern Brazil. Thematic analysis was used to analyze the information. Results: Several situations of vulnerabilities experienced by families were found when inserting the child into school, such as the performance of procedures and medications to the lunch offered at school, the difficulties experienced by the child in the face of chronic health conditions. Final considerations: It is necessary that health and education professionals pay close attention to families/caregivers and children with a chronic condition, aiming to know the situations of vulnerability experienced and favoring the establishment of support networks to support the improvement of the quality of life.

Objetivo: Conocer las situaciones de vulnerabilidad percibidas por el cuidador/familiar en la inclusión escolar de niños con condición crónica. Método: Estudio cualitativo realizado a través de entrevistas con 10 familiares/cuidadores de niños con enfermedad crónica, de junio a agosto de 2018 en un municipio del sur de Brasil. Para el análisis de la información se utilizó el análisis temático.Resultados: Se encontraron varias situaciones de vulnerabilidades vividas por las familias al momento de la inserción del niño en la escuela, como la realización de procedimientos y medicamentos al niño por parte de los profesionales de la educación, el almuerzo ofrecido en la escuela, las dificultades vividas por el niño frente a condiciones crónicas de salud. Consideraciones finales: Es necesario que los profesionales de la salud y la educación presten atención a las familias/cuidadores y niños con condición crónica,con el objetivo de conocer las situaciones de vulnerabilidad vividas y favoreciendo el estabelecimiento de redes de apoyo para apoyar la mejora de la calidad de vida.