Abstract
To know the experiences of family members of children with cystic fibrosis under the light of the theory of Callista Roy. Qualitative research that used the adaptation theoretical framework of Callista Roy for inductive content analysis. Fifteen family members, in a university hospital, between 23 and 63 years old, participated in the study, from September to October 2018. Two categories were elaborated: "Evaluation of stimuli" and "Evaluation of behaviors". The first has three subcategories: "focal", "contextual" and "residual". And the second, four subcategories: "physiological domain", "self-concept", "role function" and "interdependence". During the evaluation of stimuli, work overload and stress were identified as focal stimuli. Regarding contextual stimuli, it was noticed that the social life of caregivers was prejudiced. As for residual stimuli, the fear of loss is constant, and it appears that the emotional aspect of family members is the most affected comparing with physical exhaustion.
Highlights
Families are considered to be networks of supportive and protective bonds and are characterized as a group of people with or without any blood ties, experiencing different cycles
It generates communication difficulties between those involved in the care during the treatment of this pathology, specially because of the child’s distress and / or age; some parents do not explain to their children the pathology that affects them and even omit information from them
The statements were obtained until saturation occurred and the content was found to be sufficient to allow an in-depth, comprehensive, and diverse understanding of the process of adaptation, in accordance with what is recommended for qualitative research[15]
Summary
Families are considered to be networks of supportive and protective bonds and are characterized as a group of people with or without any blood ties, experiencing different cycles. Family caregivers of children with chronic illnesses show fatigue due to the number of activities performed and time spent on care, in addition to exhaustion for accompanying the child in their fight for life[3]. It generates communication difficulties between those involved in the care during the treatment of this pathology, specially because of the child’s distress and / or age; some parents do not explain to their children the pathology that affects them and even omit information from them. The pediatric nurse, working in direct care, has a fundamental role regarding these subjects[4]
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