Psychological status of mothers of children with cystic fibrosis
and primary ciliary dyskinesia
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.