Psychological status of mothers of children with cystic fibrosis and
primary ciliary dyskinesia
Abstract
Objectives: We aimed to investigate depression, burnout, attitude, and
burden of caregivers of children with cystic fibrosis (CF), and
especially caregivers of children with primary ciliary dyskinesia (PCD)
due to limited number of studies on this topic, and to compare them
according to their children’s clinical status. Methods: Clinical
features and demographic data of children and their families were asked
to caregivers in four pediatric pulmonology centers. Beck Depression
Inventory (BDI), Maslach Burnout Inventory (MBI), Zarit Caregiver Burden
Scale (ZCBS), and Parental Attitude Research Instrument (PARI) were
administered to caregivers in both groups. Results were compared between
the two groups. Results: In total, 131 children with CF and 39 with PCD
and their caregivers were involved in study. All primary caregivers were
mothers in both groups. Depression, burnout, and burden scores of
mothers of children with CF were significantly higher than mothers of
children with PCD (p=0.017, p=0.024, p=0.038, respectively). Burnout was
higher in both CF and PCD groups with low family income (p=0.022,
p=0.034). Number of hospital visits in the previous six months was
correlated with burnout in both CF and PCD groups (r=0.207, p=0.034;
r=0.352, p=0.044). Conclusions: Although mothers of children with CF
have higher depression, burnout, burden, and negative attitudes towards
children than mothers of children with PCD, it is disregarded in mothers
of children with PCD. Psychological problems of mothers of children with
CF and PCD may increase with frequent hospital visits, hospitalizations,
low family income, number of children, and chronic disease in another
child.