Chronic diseases in childhood affect the lives of the children as well as their caregivers. Although caregiving is a normal part of being a parent, the level of care needed by children with chronic diseases increases the burden and stress on the caregiver and affects the routines of family life and socialization.¹Caregiver’s psychological status, such as depressive symptoms, can also negatively affect the child’s condition and outcomes.²

Cystic fibrosis and PCD have a significant impact on health and quality of life of patients.³ The pathogenesis in both primary ciliary dyskinesia (PCD) and cystic fibrosis (CF) includes impaired mucociliary clearance leading to intermittent or chronic pulmonary infections. Although PCD has similar characteristics to CF, lung disease is usually milder than in CF.⁴ Patients with PCD have been shown to have similar respiratory function and magnetic resonance imaging findings as patients with mild CF.⁵ Patients with PCD generally have a longer life span and better prognosis.⁶ On the other hand, while CF can be diagnosed before clinical findings begin with newborn screening, patients with PCD can be diagnosed late with clinical findings.⁷ The frequency of chronic respiratory symptoms can potentially result in lifestyle restrictions in PCD.⁸ The caregivers of children with CF experience depression, unwillingness, dissatisfaction, and sometimes even negative feelings for the child due to long-term care. These emotions cause stress, which leads to physical, emotional, and social exhaustion.⁹ As most of the morbidity and mortality in CF is associated with respiratory infection and disease, clinical severity of lung disease plays a significant role in determining the caregiver’s mood. The psychological status of caregivers of children with CF affects their daily tasks and their children’s compliance with treatment regimens.¹⁰ In addition to the stress of managing daily care, parents also have to deal with health system issues.¹¹ Family relationships and the psychological functioning of the child with CF and family members may be affected. Social relationships can also be difficult to maintain, given the commitment to daily care and the uncertainty of the disease. Employment issues can contribute to financial distress, which has far-reaching effects on the functioning of the family system.¹²Although many studies are evaluating the psychological status of caregivers of children with CF, studies on caregivers of children with PCD are very limited.