Resumen

COSTA, Anne Shirley Menezes et al. The daily experiences of families with children and adolescents with cystic fibrosis. Rev. bras. crescimento desenvolv. hum. [online]. 2010, vol.20, n.2, pp.217-227. ISSN 0104-1282.

OBJECTIVE: the objective of this study was to learn and describe the daily experiences of families with children and adolescents with cystic fibrosis. METHOD: This is a qualitative study that shows the daily experiences of families with children and adolescents with cystic fibrosis.The study was carried out at the Fernando Figueira Child-Maternal Institute in Pernambuco, from January to May 2006. Data were collected through questionaires to characterize the care gives, taped interviews and a test of free association of words. Thirteen family members were interviewed. The words of the family members were transcribed completely and submitted to a content analysis in the thematic modality. RESULTS: from the data four themes emerged: the diagnosis and the impact of the disease, alteration in the family's daily life, perseverance and hope in the outcome of the disease and cure based on belief and faith. The words obtained from the association test were in agreement with the experiences obtained in the theme analysis (cure, hope, sadness, tiredness, fear...). This way, the family members need to be valued and listened to which would help with the diagnosis and avoid many visits to the health services. The changes in the daily routine of the family are immense as well as cases of breakdown of the family and in the social environment. The hope for a cure based on faith became evident hirong out of the study as well as with science and the outcome of the disease. The participation of the family in the care of these patients is of fundamental importance. It is also necessary to improve the sensitivity of health professionals which would improve the treatment and consequently provide better attendance.

Palabras clave : cystic fibrosis; family; child; adolescent; care.

        · resumen en Portugués     · texto en Portugués     · Portugués ( pdf )