Experiencing facilities and difficulties in family care for children with chronic diseases

Abstract

The objective was to know the facilities and difficulties faced by families in caring for children with chronic diseases. Qualitative research carried out in a hospital in southern Brazil with 20 family caregivers of children with chronic diseases. It had as theoretical reference the Symbolic Interactionism and methodological the Grounded Theory. Data were collected through interviews and submitted to open and axial analysis. As facilities for caregiving the family members reported not finding it difficult to care; valuing the child's abilities; having the family's affection; being well assisted in the health services; receiving help from the support network for caregiving and receiving financial support for caregiving. As difficulties in caring they reported feeling overburdened to care; living with the child's hospitalizations; experiencing financial difficulties in caring; experiencing family breakdown; having difficulties caring for other children; experiencing prejudice against the child; having to stop working to care for the child; living with the limitations imposed by the disease; lack of access to inputs and services necessary to care for the child; living with the child's anger for having a chronic disease; living with the need to adapt the technological apparatus for care, and experiencing the lack of support for care. It was concluded that the family care to the child with chronic disease is complex and that the family needs help to perform it. The child's diagnosis must be given to the family member by a qualified professional, transmitting information about the disease and emotional support to face the daily care.