Experiência de mães de crianças com leucemia: sentimentos acerca do cuidado domiciliar

Abstract

RESUMENSe trata de un estudio descriptivo, desarrollado con seis madres de niños con leucemia, internadas en un hospital especializado, con el objetivo de conocer quiénes son los niños atendidos en el servicio e identificar cómo perciben las madres la experiencia de cuidar en el domicilio y cómo evalúan las orientaciones recibidas para este cuidado. Los resultados revelaron que a pesar de las dudas, dificultades y conflictos en el interior de la familia, las madres cuidan con desvelo y se sienten bien de poder hacer esto, y buscan en la religiosidad fuerzas para enfrentar la situación. Además se observó que ellas sienten necesidad de más interacción con el equipo de enfermería y que no se sienten cómodas para expresar expectativas o cuestionamientos, aun cuando no comprenden las orientaciones, revelando la existencia de lagunas en el ámbito de la función educativa-asistencial de los profesionales enfermeros, como subsidio para la actuación de la madre/cuidadora en el contexto domiciliario. DESCRIPTORES ABSTRACTThis is a descriptive study carried out with six mothers of children suffering from leukemia admitted to a specialized hospital. The objective of the study was to find out who the children being treated in this service are and to identify how mothers perceive the experience of caring for their child at home and how they evaluate the orientation they receive for this type of care. The results revealed that, in spite of doubts, difficulties and conflicts within the family, mothers care for their children with selflessness and feel positive about doing so, resorting to religion to get strength to face the situation. It was also observed that mothers feel a need for further interaction with the nursing staff, but do not feel at ease to express their expectations and questions, even at times when they do not understand the orientations. This is an indication of serious gaps regarding the nursing professional's function of providing assistance and educational support to the mother/caregiver within the family context. KEY WORDS RESUMOEstudo descritivo, desenvolvido junto a seis mães de crianças com leucemia, internadas em um hospital especializado, com o objetivo de conhecer quem são as crianças atendidas no serviço e identificar como as mães percebem a experiência de cuidar no domicílio e como elas avaliam as orientações recebidas para este cuidado. Os resultados revelaram que apesar das dúvidas, dificuldades e conflitos no interior da família, as mães cuidam com desvelo e se sentem bem em poder fazer isto, e buscam na religiosidade forças para enfrentar a situação. Observou-se ainda que elas sentem necessidade de maior interação com a equipe de enfermagem e que não se sentem à vontade para expressar expectativas ou questionamentos, mesmo quando não compreendem as orientações, revelando a existência de lacunas no âmbito da função educativa-assistencial dos profissionais enfermeiros, como subsídio para atuação da mãe/cuidadora no contexto domiciliar. DESCRITORESLeucemia. Saúde da criança. Família. Enfermagem on...

Characterization of the hospitalization of children and adolescents with cancer

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“…Because of this hospital's high technology resources, it attracts patients from surrounding cities and different regions of Brazil, not always within its scope area. This characteristic can hinder the follow-up of children and adolescents of families living outside the city (5) of Ribeirão Preto and also limit the supply of other types of important care procedures, such as home visits to monitor the child and family financial aid for the family to commute to the treatment center (6) , cooperation with the family support network, and proximity to the child's school (7) , among others. …”

Childhood Cancer: Meanings Attributed to the Disease by Parent Caregivers

“…To say the word cancer in front the parents of a child in the diagnosis stage is often perceived as being a prophecy which culminates in death (Beltrão et al, 2007;Klassmann et al, 2008;Malta et al, 2008;Silva et al, 2009). This stigma goes with the concept that the child is a fragile being.…”

“…In the situation of childhood and adolescent cancer, the parents are overwhelmed by the uncertainty of the future and fear of losing their child (Klassmann, Kochia, Furukawa, Hiragashi, & Marcon, 2008;Lacaz & Tyrrell, 2003;Malta, Schall, & Modena, 2008;Misko & Bousso, 2007;Moreira & Angelo, 2008). The situation of illness is permeated by high expectations and uncertainties, as the possibility of a recurrence is always present (Arrais & Araújo, 1999;Misko & Bousso, 2007;Ortiz & Lima, 2007).…”

“…Furthermore, death, up to then never thought about, starts to haunt their lives as an inevitable and irreversible phenomenon. The stigma of cancer is that of an incurable disease, co nsidered by many as a waiting room for death, which generates intense feelings of sorrow (Beltrão, Vasconcelos, Pontes, & Albuquerque, 2007;Klassmann et al, 2008;Malta et al, 2008;Silva, Andrade, Barbosa, Hoffmann, & Macedo, 2009).…”