Publication: A qualitative study on awareness, attitudes, behaviors and social adaptation of mothers of children with cystic fibrosis
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Date
2023-06-01
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Abstract
Objectives: Cystic Fibrosis (CF) may affect the whole life of the family and
social adaptation is very important for the management. Aim of this study
is to evaluate awareness, attitudes, behaviors, and social adaptation of
mothers of children with CF.
Methods: Our qualitative study was carried out in April 2022 with 11
mothers of children admitted to a CF center in İstanbul, Türkiye. For data
collection a semi-structured question guide was applied using in-depth
interview technique. Thematic analysis method was used in analysis of the
data. The ethics committee approval was obtained.
Results: Most mothers noticed the disease in the presence of symptoms
such as salty skin, frequent productive coughing, and fever attacks.
Majority were not aware of the cause, some even thinking that it could
be due to an accident or prolonged delivery. All parents adjusted their
whole lives according to their children and their social life was limited after
the diagnosis. They abided by hygienic rules, seldom spent time outside
home, particularly avoided crowded areas.
While most mothers expressed that their family relations were strengthened, and they were supported psychosocially, some mothers could not get
the understanding and support they expected. Many of the participants
received professional psychological support to cope with this situation. The
disease had a negative impact on the education life of children; in addition
to that families had difficulties due to the economic burden of the
treatment. Majority stated the Covid-19 pandemic did not affect them so
much, since their life was already limited. Their advice for the parents of
newly diagnosed children were to be strong.
Conclusion: CF affects the lives of families in many ways, especially
psychosocially and economically. Despite all the difficulties, the mothers
could cope with life and became somewhat resilient. Awareness of CF
should be raised in society and psychosocial support should be provided to
caregivers.
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Sağlık Bilimleri, Health Sciences, Klinik Tıp (Med), Clinical Medicine (Med)
Citation
Ayvaz İ., Karavuş M., Hıdıroğlu S., Taşcan D., Atıcı F., Özyıldırım N., Binatamir R. Y., Gökdemir Y., Erdem Eralp E., Ergenekon A. P., et al., "A qualitative study on awareness, attitudes, behaviors and social adaptation of mothers of children with cystic fibrosis", JOURNAL OF CYSTIC FIBROSIS, cilt.22, sa.2, ss.173, 2023