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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http://dx.doi.org/10.1016/j.pedn.2024.04.049 | DOI Listing |
Int J Neonatal Screen
December 2024
Laboratory of Genomic, Epigenetics, Precision and Predictive Medicine, School of Medicine, Mohammed VI University of Sciences and Health, Casablanca 82403, Morocco.
Unlabelled: Newborn screening (NBS) represents an important public health measure for the early detection of specified disorders; such screening can prevent disability and death, not only from metabolic disorders but also from endocrine, hematologic, immune, and cardiac disorders. Screening for critical congenital conditions affecting newborns' health is a great challenge, especially in developing countries such as Morocco, where NBS program infrastructure is lacking. In addition, the consanguinity rate is high in Morocco.
View Article and Find Full Text PDFJ Fungi (Basel)
December 2024
Pneumology Department, Central Universitary Hospital of Asturias (HUCA), 33011 Oviedo, Spain.
The importance of fungal pathogens in cystic fibrosis (CF) patients and their diagnosis remains a challenge, so our aim was to analyze the influence of the detection of fungi in sputum by using conventional culture and molecular techniques, polymerase chain reaction (PCR), lateral flow devices (LFDs), and galactomannan (GM) on exacerbations in patients with cystic fibrosis. A prospective study was conducted in patients via follow-up in the CF Unit of the Central University Hospital of Asturias from January 2021 to April 2022. Adult patients with at least one documented exacerbation were included.
View Article and Find Full Text PDFAdv Respir Med
December 2024
Department of Pediatrics and Adolescent Medicine, Ulm University Medical Center, Ulm University, 89075 Ulm, Germany.
Elexacaftor/Tezacaftor/Ivacaftor (ETI) is a CFTR modulator therapy approved for people with cystic fibrosis (pwCF) who have at least one phe508del mutation. However, its approval in the European Union (EU) for pwCF with non-phe508del mutations is lacking, because data on treatment response in this subgroup are scarce. This retrospective observational study evaluated six pwCF (ages 6 to 66) with responsive CFTR mutations (M1101K, R347P, 2789+5G>A, G551D) undergoing off-label ETI therapy.
View Article and Find Full Text PDFBMJ Open
December 2024
Division of Endocrinology, Metabolism, and Lipids; Department of Medicine, Emory University School of Medicine, Atlanta, Georgia, USA
Introduction: People with cystic fibrosis (PwCF) are at high risk for developing cystic fibrosis (CF)-related diabetes (CFRD), which worsens morbidity and mortality. Although the pathological events leading to the development of CFRD are complex and not completely understood, dietary factors may play a role. For example, habitual intake of dietary added sugar (i.
View Article and Find Full Text PDFBreastfeed Med
December 2024
Division of Clinical Pharmacy, Skaggs School of Pharmacy and Pharmaceutical Sciences, University of California, San Diego, California, USA.
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