Compreendendo a leucemia: a percepção da família sobre o diagnóstico e o tratamento da doença

AUTOR(ES)
DATA DE PUBLICAÇÃO

2007

RESUMO

Introduction: acute lymphocytic leukemia (ALL) is the most common neoplasm in childhood. Currently, around 80% of children and adolescents newly diagnosed may achieve cure. The treatment is long and painful, with changes in the family routine, internment and frequent consultations. Despite the good prognosis, leukemia is linked to the cancer symbolism of pain and death. Objectives: to understand the perception of ALL children / adolescents carers, users of the Serviço de Hematologia do Hospital das Clínicas da UFMG (HC-UFMG), about the disease, the treatment and their expectations in relation to the future. Methods: a qualitative research was carried out using semi-structured interviews for the data collection. 20 carers of ALL children / adolescents assisted at the Hospital das Clínicas da UFMG (HC-UFMG) were interviewed. The material was prepared with discourse analyses techniques. Results: the interviewed people were mostly women, between 25 and 40 years old, and around half of these had school education corresponding to complete High School level. The participants remember clearly how the disease was discovered, since when the symptoms have been perceived to be more significant than those of a normal child disease. They report the delay in obtaining the diagnosis due to the hardship concerning the access to the health care system and the differential diagnosis complexity, aggravated by their anxiety. Many didnt know the meaning of leukemia and are shocked when establish the relation with cancer. The treatment most disturbing aspect is internment, and among the side effects, is the hair loss. All the carers describe how the medication was given and many use strategies in order not to forget it. In relation to habits change, they emphasize the exigencies of care with food, school withdrawal and restrictions to getting together with family and friends. They make a positive evaluation of professionals and value the physicians communication. They show an utilitarian vision of the information. They want information according to their doubts and set a limit about what they want to know when dealing with the prognosis. The sick child becomes outstandingly treated in the family. The solidarity from other parents in similar situation is a support point for their anguish. They take care of the child within the contradiction of the great possibility of cure and the risk of death. Conclusion: this study approach allowed to take the disease and the treatment as whole. It shows that the weight of the prejudice linked to cancer goes through the different treatment stages from the diagnosis to the treatment. Other treatment aspects, besides medication, deserve more attention, as they bring additional worry and may interfere with its sequence. In relation to communication, the results suggest an institutional opening for answering the carers collective demands about the treatment necessary information. Taking the treatment process as a whole, the key of success may be on the adoption of a therapeutic alliance philosophy between patient/family and the professionals involved.

ASSUNTO(S)

cuidado da criança decs dissertação da faculdade de medicina. ufmg criança decs dissertações acadêmicas decs leucemia leucemia em crianças teses assistência domiciliar decs pediatria teses. cuidadores decs

ACESSO AO ARTIGO

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