A recidiva do câncer pediátrico: vivências da criança e do cuidador-familiar [Relapse of pediatric cancer: the experience of the child and the family caregiver]

COLLI, M. N. F. A. A recidiva do câncer pediátrico: vivências da criança e do cuidador-familiar [Relapse of pediatric cancer: the experience of the child and the family caregiver]. Master’s Dissertation – Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto (USP/RP). Ribeirão Preto (SP), 2013.

Available on: http://www.teses.usp.br/teses/disponiveis/59/59137/tde-29112013-145453/en.php

In the context of Oncology, recurrence is defined as the reappearance of cancer after a period of remission, which leads to a lower possibility of cure and need for reorganization of the patient and his family to deal with the treatment situation. Considering the high level of anxiety associated with the diagnosis of recurrence and the reduced number of investigations available in the national and international literature on its psychosocial aspects in the context of pediatric oncology, the present study aimed to understand the experiences of children and their caregivers-families facing this phase of the treatment. Participated in the research children aged between five and 12 incomplete years old, in treatment for cancer recurrence in a Brazilian reference center for attention in children onco-hematology, and their main caregivers. This is a descriptive and exploratory study, focusing on the clinical-qualitative approach. In order to meet the proposed objectives, an interview, guided by a semi-structured script, was carried out with the family member responsible for the patient’s care and two sessions of application of the Drawing-and-Story Procedure with the child. The verbalizations were audio-recorded with the consent of the participants. The reports extracted from the interviews and the narratives obtained in the sessions with the children were transcribed verbatim and later submitted to thematic content analysis, and the Drawing-and-Story sets were analyzed according to the recommendations in the literature. The results showed that the diagnosis of relapse reminded the participants of the initial period of investigation and diagnosis, but with greater mobilization and affective intensity. Feelings of frustration emerged in relation to expectations of cure, experiences of threat and loss of control in the face of illness and prognosis, favoring confrontation with the possibility of death. Such a situation impaired the projection for the temporality of the cure, in a way that brought implications for the meaning of existence. The need to restart the treatment was accompanied by the need to reorganize the family dynamics and the affective strengthening to face the vicissitudes of therapeutic daily life. Relationships were observed between parental and child experiences, covering issues such as communication and the meanings attributed to the illness. Religiosity and the search for a sense of control were important resources used by the caregivers to face the challenging situations, while the children tried to maintain an affective closeness with the caregivers and to strengthen their feeling of security. Understanding the experiences of the child and his caregiver-family can offer subsidies for the planning of psychological interventions that favor the facing of the peculiarities of the situation of illness introduced by the diagnosis of recurrence of childhood cancer, contributing to the implementation of palliative care.

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