COPING WITH CYSTIC FIBROSIS IN THE REPUBLIC OF MACEDONIA – PARENT PERSPECTIVE
Journal
Prilozi (Makedonska akademija na naukite i umetnostite. Oddelenie za medicinski nauki)
Date Issued
2019
Author(s)
Nada Pop-Jordanova
Lidija Spirevska
DOI
10.2478/prilozi-2020-0006
Abstract
Introduction: Cystic fibrosis (CF) is a progressive, life-threatening, genetic disease which mainly dam ages the lungs and the digestive system. It’s a complex medical condition, with several individual forms
and variation in the symptoms severity. Few factors such as age of establishing the diagnosis, the number
and the type of infections and their management, best treatment options, comorbid conditions etc. can
influence the patient’s overall health, disease progression and quality of life. Many CF patients will reach
adulthood, so coping with the chronic disease is very important for the overall health and everyday living.
Aim of the study: To screen the quality of life in CF patients in the Republic of Macedonia, from the
parent perspective.
Subjects and methods: In the study we have included 55 parents of CF patients. We have created a ques tionnaire, specially designed for this survey, with questions related to their everyday coping with CF and
quality of life.
Results: The majority of the parents refer to the overall typical social and emotional life of their children,
addressing some difficulties concerning the financial aspect of the disease and still significantly having
fear from the stigma in the society.
Conclusion: CF patients and their families in the Republic of Macedonia must overcome many obstacles
on daily basis. Despite that, they can still have full and meaningful lives.
and variation in the symptoms severity. Few factors such as age of establishing the diagnosis, the number
and the type of infections and their management, best treatment options, comorbid conditions etc. can
influence the patient’s overall health, disease progression and quality of life. Many CF patients will reach
adulthood, so coping with the chronic disease is very important for the overall health and everyday living.
Aim of the study: To screen the quality of life in CF patients in the Republic of Macedonia, from the
parent perspective.
Subjects and methods: In the study we have included 55 parents of CF patients. We have created a ques tionnaire, specially designed for this survey, with questions related to their everyday coping with CF and
quality of life.
Results: The majority of the parents refer to the overall typical social and emotional life of their children,
addressing some difficulties concerning the financial aspect of the disease and still significantly having
fear from the stigma in the society.
Conclusion: CF patients and their families in the Republic of Macedonia must overcome many obstacles
on daily basis. Despite that, they can still have full and meaningful lives.
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