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Self-care deficits reported by school children with cystic fibrosis
Thiago Doria Rego1, Juliana Rezende Montenegro Medeiros de Moraes1, Ivone Evangelista Cabral1
1Anna Nery School of Nursing, Federal University of Rio de Janeiro, Brazil.
Insights
Children with cystic fibrosis experience self-care deficits due to negative attitudes toward their condition. Recognizing these deficits is crucial for improving their autonomy and care.
Area of Science:
- Pediatric Nursing
- Chronic Disease Management
- Patient Self-Care
Background:
- Self-care involves regulating bodily functions, but health status and age can necessitate external assistance.
- Cystic fibrosis (CF) is a chronic condition affecting 1 in 10,000 Brazilian live births, with 73% of patients being pediatric.
- Nursing support is vital for enhancing self-care skills in CF patients until they achieve autonomy.
Purpose of the Study:
- To identify self-care deficits in schoolchildren with cystic fibrosis.
- To understand the challenges faced by pediatric CF patients in managing their condition.
Main Methods:
- A qualitative study involving eight Brazilian schoolchildren with cystic fibrosis.
- Art-based techniques were utilized during interviews.
- Minayo's thematic analysis was applied for data interpretation.
Main Results:
- Results aligned with Orem's theory of self-care deficits.
- A primary theme of 'universal self-care requisites' was identified.
- Three subthemes emerged: maintaining adequate air supply, balancing activity and rest, and avoiding risks.
Conclusions:
- Schoolchildren with CF often exhibit negative attitudes towards their disease, hindering autonomous self-care.
- This attitude contributes to self-care deficits, increasing reliance on caregivers.
- Acknowledging these deficits is essential for developing comprehensive self-care strategies and empowering families.
Background:
Self-care refers to the ability that an individual has or develops to regulate the functioning of the body. Health status and age are factors associated with dependency on, and the need for, someone else to take over self-care. In the present case, there was a self-care deficit. Cystic fibrosis is a chronic disease that occurs in one in 10,000 live births in Brazil, and the affected population in the country is predominantly pediatric (approximately 73%). Support from nursing teams is necessary to improve patients' skills until they can take full responsibility for their self-care.
Purpose:
This study aimed to identify self-care deficits based on reports from schoolchildren with cystic fibrosis.
Design And Method:
A qualitative study was conducted with eight Brazilian schoolchildren with cystic fibrosis, using an art-based technique during interviews. Minayo's thematic analysis was used for data analysis and interpretation.
Results:
These results emerged from Orem's theory of self-care deficits and needs. A main theme labeled as universal self-care requisites was identified, and three subthemes were derived-maintenance of an adequate air supply; maintenance of a balance between activity and rest; and avoiding risks to life, bodily functions, and well-being.
Conclusion:
Schoolchildren living with cystic fibrosis have a negative attitude toward their disease, which makes it difficult for them to acquire the ability to care for themselves with greater autonomy. This leads to deficits in the self-care delivered by providers.
Implications To Practice:
It is necessary to recognize the deficits in self-care and the extent to which children living with cystic fibrosis depend on self-care providers. Families must be aware of these self-care deficits to develop holistic self-care abilities.
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