Although there are many studies investigating the psychological status of caregivers of children with CF, data on caregivers of children with PCD are limited. This study showed that depression, burnout, burden, and negative attitudes of mothers of children with CF were higher than mothers of children with PCD, but these problems were also quite common in mothers of children with PCD. Mothers of children with CF and PCD with lower family income had more burnout. Rejection of the homemaker role was higher in mothers of children with PCD who had another child with chronic disease. Frequent hospitalizations were negatively associated with BMI in children with PCD. Frequent hospital visits were correlated with burnout of mothers in children with CF and PCD.

In a study evaluating the depression and anxiety levels of patients with CF and their caregivers, it was found that 20-34% of mothers had depression in the evaluations made with different scales. Mothers’ depression has been found to be associated with children’s recent intravenous antibiotic therapy and physiotherapy.²⁷ In our study, the depression level of the mothers of children with CF was higher than the mothers of children with PCD. Depression in mothers of children with CF was associated with the presence of chronic disease in another child, low family income, and colonization in their children. In a study of 326 caregivers of children with CF, a higher burden was found in the caregivers of older patients and patients with P. aeruginosa infection.²⁸ In our study, the caregiver burden of mothers of children with CF was higher than mothers of children with PCD. It was observed that as the number of hospital visits and duration of hospitalization of patients with CF increased, their respiratory functions were also negatively affected. The caregiver burden was increased in the mothers of children with CF who had a history of sibling death and frequent hospitalizations. Frequent hospital visits, long and frequent hospitalizations, and lower clinical scores may affect the psychological status of the mothers of patients with CF and may affect the care of their children.

Carotenuto et al.²⁹ found that mothers of children with PCD have higher levels of stress compared with mothers of healthy children. PCD is highly stressful and depressing for affected children and their families. In our study, all mothers of children with PCD had caregiver burden, approximately one in three mothers had depression, and one in ten mothers had burnout. As the depression level of mothers of children with PCD increased, burnout and caregiver burdens are also increased. Like children with CF, children with PCD need frequent clinical evaluation and treatment, including chest physiotherapy and inhaled therapies, and antibiotics for recurrent respiratory infections. All these daily practices can lead to caregiver burden, burnout, and depression. In mothers caring for an ill child, burnout increases due to an increased sense of responsibility, concerns about the health of the child, limited social activities, and the inability to find time for their own needs. Due to burnout and caregiver burden, mothers may feel insignificant and withdrawn from their environment and have an introverted and depressed mood. These negatively affected moods of mothers may affect the care of their children, adherence to treatment, and the course of the disease. The higher depression, burnout, burden and negative attitudes of mothers of children with CF than mothers of children with PSD may be related to the younger age of children with CF and their greater need for maternal care for all daily practices.

Burnout caused by prolonged stress is quite common among parents of children with chronic illnesses.³⁰ Children with PCD usually have a normal life span. Lung functions usually deteriorate more slowly than in CF.³¹ In our study, the level of burnout was associated with low family income and the frequency of hospital visits of their children in mothers of both children with CF and PCD. Anxiety about the unmet daily financial needs of their children due to low family income may increase the burnout level of mothers. Hospital visits and hospitalizations of children with PCD are, as expected, less than for children with CF, and their respiratory function is also significantly better. The BMIs of children with PCD who had frequent hospitalizations were decreased. Growth monitoring is important, especially in children with PCD who have frequent hospitalizations.

Caring for a child with a chronic illness can pose significant challenges for caregivers, due to uncertainty about the aggravation of the disease, financial costs associated with care, compliance with treatment programs, impact on family life due to frequent outpatient visits, and hospitalization.²⁸ In a study conducted with caregivers of 44 children with CF and 19 with PCD, the burden of caregivers of children with CF was higher than for PCD in relation to pulmonary function and quality of life.³² In our study, mothers of all children with CF and PCD had caregiver burden. Families have to cope with daily life difficulties, implementation of complex treatment regimens, regular clinic visits, care costs, disruptions in plans, as well as uncertainties about the progression of chronic disease. In addition, problems in the marital relationship, the decrease in the life expectancy of the child, and the decrease in the time allocated to the family are significant sources of stress.³³ In a study evaluating 36 children with CF, mothers of children with CF with frequent hospital visits or hospitalizations were found to be more overprotective, rejecting the role of homemaker, and experiencing marital conflicts.³⁴ In our study, marital conflict was higher in mothers of children with PCD with burnout and caregiver burden. Rejection of the role of homemaker was more common in mothers who had other children with chronic disease and in mothers with marital conflict. The time the mother spends with their children can reduce the time spent with other family members, which may lead to rejection of the role of homemaker, affecting family relationships and thus increasing conflict. Mothers who have strict rules can cause unrest in the home and marital problems due to the increased stress associated with their child’s illness and compliance with their treatment. This situation can be exacerbated, especially in mothers who have other children with chronic disease.

The nature of overprotection has been defined as exhibited protective behavior that is excessive in light of the child’s developmental stage and has been associated with parental stress. Parental stress has been found to be associated with a child’s disease outcomes.³⁵ In our study, mothers of children with PCD who were overly controlling, intrusive, and strictly disciplined had a negative democratic attitude. Fears and anxieties of mothers about the future of the child may lead to overprotective, stricter, and authoritarian behaviors. Democratic attitude was lower in the mothers of children with PCD when the mothers had more children. The fact that mothers spend more time with their ill children and protect them more may cause them not to show the same attention to their healthy children.

The mean of the consanguineous marriages is 23.2 % (8.9-42.6) in our country according to 2016 data of the Turkish Statistical Institute.¹⁵ In our study, consanguinity were present in 51.1% of CF and in 43.5% in PCD families. The higher rates of consanguineous marriages in our study compared to the general population may be associated with the increased incidence of both diseases in consanguineous marriages.

Previous research on well-being and psychological issues of PCD and CF has focused on the emotional burden of the condition, including patients’ concern about current and future health. The issue has been recently further enriched with the contribution of several studies conducted during the current SARS-CoV-2 pandemic, an event that has had an impressive impact on the quality of life of patients with chronic conditions and their families.^36,37

The limitations of our study were that all primary caregivers were mothers and the questionnaires were administered cross-sectionally.

In conclusion, mothers of children with CF and PCD had various difficulties related to the children’s disease in our study. Although the psychological status of mothers of children with PCD was better than mothers of children with CF, their problems may increase with frequent hospitalizations, low family income, number of children, and chronic disease in another child. It is important not to neglect the psychological problems that mothers of children with PCD may experience due to difficulties associated with care. Screening the psychological status of mothers of children with CF and PCD and providing them with psychological and social support may help reduce their anxiety about their children’s health and benefit the care of their children.