Made available in DSpace on 2014-12-17T13:54:48Z (GMT). No. of bitstreams: 1 JociaraAN_DISSERT.pdf: 1895191 bytes, checksum: dbcf62f6afa82ae98eef54e8d4e6cf1a (MD5) Previous issue date: 2011-06-27 / Coordena??o de Aperfei?oamento de Pessoal de N?vel Superior / This paper discusses the experiences related to the treatment of children?s cancer which had children, their mothers and families as their main characters. They were mainly originated from areas in the countryside and urban poor areas in the State of Rio Grande do Norte. The non-governmental organization Grupo de Apoio ? Crian?a com C?ncer (GACC) was the privileged ethnographic location. In this setting, the mother, which was called acompanhante (companion), and the children, defined as pacientes (patients), were often sheltered in reason of therapeutic practices and the treatment undertaken by children in a nearby hospital. This study aims to focus on the therapeutic itinerary, beyond the children?s suffering, dealing with the family as a whole, since the moral values from these popular families imply the complete involvement of the family in relation to the illness and its treatment. Therefore, it is experienced as a family problem. We also intend to understand the construction of meanings to the illness, dealing with the ideological continuity in the relationships between the families and the GACC. These meanings were built in the intersection of these two spheres, which refer particularly to medical, religious and emotional explanations. Ethnographic methods were applied in this research at the entity and another social contexts, such as the family households. I also tried to retrieve the process of treatment outside the GACC, visiting the family context, when doing dense interviews or just having conversations with informants. It was found that the GACC, as a non-governmental organization, generates a negotiation of identities, which develops, then, through the family as a whole, but also through the child and especially the mother, affecting, in some way, their internal organization. Furthermore, the meanings of the experience of illness appeared to be shaped by the family sphere as well as by the logic of public health structures / Este trabalho aborda experi?ncias ligadas ao tratamento do c?ncer infantil vividas por crian?as, m?es e fam?lias das classes populares urbanas e do interior do Rio Grande do Norte, tendo como loca??o etnogr?fica o Grupo de Apoio ? Crian?a com C?ncer (GACC) do RN. No GACC, tanto a m?e, definida como acompanhante, como a crian?a, classificada como paciente, ficam abrigadas mais comumente em raz?o das pr?ticas terap?uticas e de tratamento pelas quais passam as crian?as. O objetivo desse estudo ? focar o itiner?rio terap?utico, para al?m da crian?a que sofre a enfermidade, na fam?lia como um todo, pois o universo moral do tipo de fam?lia em quest?o implica o envolvimento de todo o n?cleo parental no tratamento da mol?stia da crian?a, que ?, por isso, vivenciada como uma quest?o familiar. Pretendemos tamb?m entender a constru??o de sentidos para a doen?a, tratando das rela??es de continuidade ideol?gica entre as fam?lias e o GACC, pois eles constroem-se no entrecruzamento de ambas as esferas, que recorrem, cada uma de modo particular, ?s explica??es m?dicas, religiosas e emocionais. Foi aplicado o m?todo etnogr?fico na pesquisa feita na entidade e em outros contextos, tais como as resid?ncias familiares. Atrav?s de entrevistas densas e conversas com informantes, tamb?m tentamos resgatar o processo do tratamento fora do GACC, alcan?ando o contexto familiar. Constatou-se que a entidade gera uma negocia??o de identidades, que perpassa, ent?o, a fam?lia como um todo atrav?s da crian?a e, sobretudo, da m?e, afetando, de algum modo, a sua organiza??o interna. Al?m disso, os sentidos para a experi?ncia da enfermidade apareceram moldados tanto pela esfera familiar como pela l?gica das estruturas p?blicas de sa?de

Les besoins psychosociaux des parents d’enfants atteints de cancer est un concept qui a été étudié dans les années antérieures. Toutefois, malgré la pertinence des résultats de ces écrits scientifiques, il subsiste un manque de consensus en ce qui a trait aux besoins de ces parents. Notons que les conséquences négatives de la parentalité d'un enfant diagnostiqué avec un cancer sont généralement plus prononcées chez les mères, ce qui fait en sorte que le but de cette revue intégrative vise à établir l’état des connaissances entourant leurs besoins psychosociaux. Le Modèle humaniste des soins infirmiers – UdeM (Cara et al., 2016) a été choisi comme cadre conceptuel, afin de permettre une vision holistique centrée sur la personne. La méthode proposée par Whittemore et Knafl (2005) pour la conduite des revues intégratives a été utilisée en respectant les cinq étape suivantes: 1) l’identification du problème; 2) la recension des écrits; 3) l’évaluation des données; 4) l’analyse des données; et 5) la présentation des résultats. Vingt-et-un articles ont été retenus, la majorité (14/21) étant de bonne/très bonne qualité. Les résultats des écrits scientifiques retenus proposent deux grandes catégories de besoins psychosociaux chez les mères d’enfants diagnostiqués avec un cancer : les besoins liés au soi en tant que mère (qui sont d’ordre émotionnel, social, spirituel, ainsi que des besoins de sécurité) et les besoins liés à l’état de santé de l’enfant (qui englobent le besoin d’être présente au chevet de son enfant et le besoin d’être rassurées quant à son état de santé). Les résultats dressent un portrait pertinent et approfondi du phénomène. Ils mettent en lumière la plus-value de l’infirmière dans l’accompagnement des mères d’enfants atteints de cancer, et ce, durant toute la trajectoire de la maladie. Cet accompagnement implique pour l’infirmière de prendre en compte la culture de la mère (y compris la dimension sociale et spirituelle), quel que soit la phase de la maladie de son enfant. Ainsi, il est suggéré que l’infirmière, selon ses valeurs humanistes, soit vigilante à la liberté de choix des mères et de maintenir une posture holistique, adaptée à la situation. / The psychosocial needs of parents of children with cancer is a concept that has been studied in previous years. However, despite the relevance of the results of this scientific literature, there remains a lack of consensus regarding the needs of these parents. Noting that the negative consequences of parenting a child diagnosed with cancer are generally more pronounced for mothers, this integrative review aims to establish the state of knowledge surrounding their psychosocial needs. The Humanistic Model of Nursing – UdeM (Cara et al., 2016) was chosen as the conceptual framework to allow for a holistic person-centered view. The method proposed by Whittemore et Knafl (2005) for conducting integrative reviews was used, following its five steps: 1) problem identification; 2) literature review; 3) data assessment; 4) data analysis; and 5) presentation of results. Twenty-one articles were selected, the majority (13/21) being of good/very good quality. The results of the selected scientific literature suggest two broad categories of psychosocial needs in mothers of children diagnosed with cancer: the needs related to the maternal self (which correspond emotional, social, spiritual, and safety needs); and the needs related to the child's health status (which include the need to be present at the bedside and the need for reassurance about the child's health status). The results provide a relevant and in-depth portrait of the phenomenon. They highlight the added value of nurses in accompanying mothers of children with cancer, throughout the pathway of the disease. This support implies that the nurse must consider the mother's culture (including the social and spiritual dimension), whatever the phase of her child's illness. Thus, it is suggested that the nurse, according to her humanistic values, be vigilant to the mother's freedom of choice and maintain a holistic posture, adapted to the situation.