Paralisia cerebral: o significado do cuidar no contexto familiar de camadas populares

• Ano de defesa: 2012
• Autor(a) principal: Costa, Elisa Maria Almeida
• Orientador(a): Pinto, Neide Maria de Almeida
• Banca de defesa: Gediel, Ana Luisa Borba , Barreto, Maria de Lourdes Mattos
• Tipo de documento: Dissertação
• Tipo de acesso: Acesso aberto
• Idioma: por
• Instituição de defesa: Universidade Federal de Viçosa
• Programa de Pós-Graduação: Mestrado em Economia Doméstica
• Departamento: Economia familiar; Estudo da família; Teoria econômica e Educação do consumidor
• País: BR
• Palavras-chave em Português: Paralisia cerebral; Cuidado; Redes sociais
• Palavras-chave em Inglês: Cerebral palsy; Care; Social networks
• Área do conhecimento CNPq: CNPQ::CIENCIAS SOCIAIS APLICADAS::ECONOMIA DOMESTICA
• Link de acesso: http://locus.ufv.br/handle/123456789/3363

This research aimed to analyze the meaning of care and the implications of caring for disabled people to the main caregiver and to their family. The purposes of this work were specifically: to analyze how these families from lower classes recognize and elaborate the disability of the family member; to understand possible changes that happen in the family organization and interaction because of a family member with disability and which are the repercussions of this fact on house structure (furniture, space), social, economic and cultural spheres of the family; to understand what is the meaning of caring for a disabled family member and the social and economic cost of the care to the main caregiver; and to identify the influence of the social network support (institutional or not institutional) in the care provision to the person with disability. The theoretical background was based on three categories disability, family and care in order to understand how the individual with disability was historically treated and taken care by the State and the family. Besides that, we aim to understand how the care actually happens in the family, in the family members roles towards care, and in the social support network to the families. We defined APAE (Associação de Pais e Alunos Excepcionais Parents and Exceptional Students Association), located in Viçosa, MG, as our empirical field. The sample consists of twelve women caregivers of people with cerebral palsy. The data collection method was case study supported in the techniques: field diary, questionnaire and semistructured interview. The data analysis was based on a qualitative and quantitative approach from interviews and the field diary, was analyzed by the speech analysis. The information obtained by questionnaire were analyzed and reduced to descriptive terms which were subsequently quantified. Was detected that the way through the family used to recognize and elaborate the family member disability was related to the historically and social image built for disability and to several factors, from the way the diagnosis was communicated by the health care professional staff to the emotional state of the family members. Sometimes, the relatives did not feel ready to understand what happened or did not want to receive further information about the child clinical picture, which limited their knowledge on the subject. Besides those subjective emotional aspects, the presence of a disabled family member with cerebral palsy involved objective changes, such as: routine changes, in the house structure and in the social relations. These changes intensely affected the main women caregivers lives. They used to assume the activities related to everyday care of the family member with cerebral palsy. Besides that they also used to do many activities as mother, wife, housewife and sometimes farm workers, maid, store clerk. These responsibilities assumed by women caregivers became factors that contributed to possible physical and emotional distress. Due to that, the mothers several times found in the support social network the support to reduce the burden from the act of care or to adapt themselves to the new routine. The results reinforce the importance the social support in the family adaptation process, once it influences the family aspects of behavior. We specially remark those aspects related to the human capacity to solve the problems through many types of support, which vary from economic contribution and emotional support to the information supply and the help or assistance in the care of the person with disability.