Quality of life in children with cystic fibrosis: individual and family aspects
DOI:
https://doi.org/10.47224/revistamaster.v8i15.421Keywords:
Cystic fibrosis, Quality of life, Child careAbstract
Cystic Fibrosis (CF) is a chronic disease that causes a series of systemic changes, which can directly interfere with the quality of life (QoL) in relation to the health of patients, their family members and their caregivers. Hence, this study aimed to seek consensus in the literature to support the health care of children with CF, focusing on knowledge about QoL of the patient-caregiver binomial. For this purpose, an Integrative Literature Review was developed through a search expression on Brazilian Virtual Health Library using two indexers. A total of 169 articles were found, of which 23 were analyzed for meeting the inclusion criteria. It was observed that the QoL of patients with CF varies according to sex and age, and it is influenced by social, contextual, and cultural issues. In addition, the perception of parents and caregivers about the children and adolescents’ QoL is different from that reported by patients, but this difference decreases as new positions are assumed in relation to life and due to increased anxiety about the treatment development as they are getting older. Thus, the qualification of health care must be guided by the understanding of the social determinants of health related to the context of each patient and caregiver. The applied Integrative Review methodology was useful in presenting a consensus on issues involving the QoL of patients with CF and their family perceptions, however more research is needed on the subject regarding the Brazilian reality, using specific questionnaires for CF.
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