A experiência subjetiva de indivíduos que possuem irmãos com deficiência

Abstract

Family relations play a fundamental role in the development of individuals. The diagnosis of a disability imposes difficulties and new adaptations to the whole family, directly affecting the life of parents and siblings of the disabled one. The purpose of this dissertation was to understand how individuals who have siblings with disabilities perceive their experience in this context, that is, the expressions, feelings, fantasies and needs that may arise in relation to family experience and fraternal relationship. To achieve this goal, two studies were carried out. Study 1, characterized as an integrative review of the literature, aimed to understand how the academic productions of the last 10 years have portrayed the feelings and needs, regarding the fraternal relationship and the family dynamics, of individuals with typical development who have siblings with disability. We analyzed 21 articles, national and international, published between 2008 and 2016, retrieved in different scientific databases. From this analysis, we found ambivalent feelings about the relationship established with the disabled sibling, with repercussions on subjectivity, family dynamics and social level. Study 2 consisted of an empirical research, with a qualitative approach, whose objective was to understand the subjective experience of the child with typical development that has a sibling with disability, through their perceptions, fantasies, feelings and expressions that arise in the family experience, with the parents and with the disabled sibling. Six children aged between five and ten, whose siblings were diagnosed with Physical or Intellectual Disability participated in the study. The data were collected from the Play Interview, the Game of Scribble and the Procedure of Drawing Families with Stories, and analyzed through Content Analysis in its Thematic and Enunciation aspects. In addition, they were interpreted according to the theoretical reference of D. W. Winnicott and Walter Trinca. From this analysis, the results found included the child's perception of the sibling’s disability, subjective expressions of experience related to this context, and perceptions about the care exercised by the family to the disabled sibling. These results enabled us to understand how participating children perceive their sibling’s disability and the necessary care activities. The research also allowed the expression of elements of the subjective experience of the participants in relation to the context experienced, the parents and the sibling with disability. It is understood that both studies dialogue with each other, allowing the deepening in the questions pertinent to the objects of the study and the construction of new knowledge in the area. The results of the studies point, in particular, to the importance of listening, welcoming and meeting the needs of individuals with siblings with disabilities, including them in the care of families living in the context of disability, especially when it comes to children. The research carried out has the potential to instigate discussions and strategies that favor the processes of care for the whole family group.

Relacionamentos fraternos permeados pela deficiência de um dos irmãos podem impor adaptações e exigências a indivíduos com desenvolvimento típico. A presente revisão integrativa objetivou compreender como as produções acadêmicas dos últimos 10 anos têm retratado os sentimentos e necessidades, no tocante à relação fraterna e à dinâmica familiar, de indivíduos com desenvolvimento típico que possuem irmãos com deficiência. Foram analisados 21 artigos nacionais e internacionais. A despeito da multiplicidade cultural dos estudos, muitos resultados semelhantes foram observados, divididos nos seguintes eixos e subdivisões: (1) Ambivalência de Sentimentos e Manifestações, subdividido em (a) Repercussões na Subjetividade, (b) Repercussões na Dinâmica Familiar e (c) Preocupações com o Futuro: Irmão como Cuidador; (2) Necessidades de Irmãos de Pessoas com Deficiência, subdividido em (a) Comunicação e Informação, (b) Acolhimento e Possibilidade de Expressão, (c) Socialização, (d) Melhoria nos Serviços de Saúde e Cuidado; (3) Repercussões em Nível Social, subdividido em (a) Relacionamentos Interpessoais e Lazer: Novas Configurações, (b) Lidando com Preconceito e Estigma, (c) Proposta de Intervenção com Irmãos. Constata-se a importância da composição de espaços de escuta para acolher o irmão do indivíduo com deficiência, com o aprimoramento de recursos de apoio social para assistência adequada às suas necessidades.

Fraternal relationships permeated by the disability of one sibling may impose adaptations and demands on individuals with typical development. The present integrative review aimed to understand how the academic productions of the last 10 years have portrayed the feelings and needs, regarding the fraternal relationship and the family dynamics, of individuals with typical development who have siblings with disabilities. 21 national and international articles were analyzed. Despite the cultural multiplicity of the studies, many similar results were observed, divided into the following axes and subdivisions: (1) Feelings and Manifestations Ambivalence, subdivided into (a) Repercussions in Subjectivity, (b) Repercussions in Family Dynamics and (c) Concerns about the Future: Brother as Caregiver; (2) Needs of Siblings of People with Disabilities, subdivided into (a) Communication and Information, (b) Refuge and Possibility of Expression, (c) Socialization, (d) Improvement in Health and Care Services; (3) Repercussions at Social Level, subdivided into (a) Interpersonal Relationships and Leisure: New Configurations, (b) Dealing with Prejudice and Stigma, (c) Proposal of Intervention with Siblings. The importance of the composition of spaces to listen the sibling of the disabled person, with the improvement of social support resources for assistance adequate to their needs, is noted.

Considerando que a complexidade do vínculo fraterno pode ser intensificada pelo contexto da deficiência, a presente pesquisa objetivou compreender a experiência subjetiva da criança com desenvolvimento típico que possui um irmão com deficiência, por meio de suas percepções, fantasias, sentimentos e expressões que surgem na vivência familiar, no relacionamento com os pais e com o irmão com deficiência. Participaram seis crianças, com idades entre cinco e dez anos, cujos irmãos foram diagnosticados com Deficiência Física ou Intelectual. A coleta dos dados se deu a partir dos instrumentos: Entrevista Lúdica, Jogo do Rabisco e Procedimento de Desenho de Famílias com Estórias (DF-E). Os encontros foram audiogravados e transcritos na íntegra, e os dados obtidos foram analisados mediante a Análise de Conteúdo em suas vertentes Temática e da Enunciação, e interpretados a partir do referencial teórico de D. W. Winnicott e Walter Trinca. Ao final da análise, chegou-se a três categorias temáticas e subdivisões: (1) Percepção da deficiência do irmão, subdividida em: (a) Conhecimento e compreensão sobre o diagnóstico; (b) Caracterização do irmão com deficiência; (2) Expressões da experiência subjetiva relacionadas ao contexto da deficiência, subdividida em: (a) Disputa pela atenção dos pais; (b) A expressão de sentimentos difíceis; (c) Questões pertinentes ao brincar; (d) Idealizações e possibilidades diante da realidade; e (3) Percepções sobre o cuidado, subdividida em: (a) O cuidado exercido pela família; (b) O irmão como cuidador. A pesquisa possibilitou às crianças participantes a expressão de elementos de sua experiência subjetiva, contextualizados nas questões pertinentes à deficiência do irmão.

Considering that the complexity of the fraternal bond can be intensified by the context of the disability, the present research aimed to understand the subjective experience of the child with typical development that has a sibling with disability, through their perceptions, fantasies, feelings and expressions that arise in the experience family, in the relationship with the parents and with the disabled sibling. Six children, aged between five and ten, whose siblings were diagnosed with Physical or Intellectual Disabilities participated. The data were collected from the instruments: Play Interview, Scribble Game and Procedure for Drawing Families with Stories. The meetings were audiographed and transcribed in their entirety, and the data obtained were analyzed through Content Analysis in its Thematic and Enunciation aspects, and interpreted from the theoretical framework of D. W. Winnicott and Walter Trinca. At the end of the analysis, three thematic categories and subdivisions were reached: (1) Perception of the sibling’s disability, subdivided into: (a) Knowledge and understanding about the diagnosis; (b) Characterization of the disabled sibling; (2) Expressions of subjective experience related to the context of the disability, subdivided into: (a) Dispute for parental attention; (b) The expression of difficult feelings; (c) Questions relevant to playing; (d) Idealizations and possibilities facing reality; and (3) Perceptions about care, subdivided into: (a) Care exercised by the family; (b) The sibling as caregiver. The research allowed participating children to express elements of their subjective experience, contextualized in the issues pertinent to their sibling’s disability.