Care burden and resilience in parents of children with special needs and chronic diseases

It is known that even under normal circumstances, parenting is a difficult process. However, providing care for children with special needs or chronic diseases also becomes a part of parenting, which complicates the situation (Çulhacik et al., 2020; Keniş-Coşkun et al., 2020). Special needs are conditions characterized by a lack of skills that prevent the development of cognitive, language, motor and social abilities, especially during the developmental period (World Health Organization-WHO, 2016). Examples of special needs conditions are autism, attention-deficit/hyperactivity disorder, developmental language disorder, specific learning disability, developmental delay, physical disability, mental retardation, and spasticity (Kaçan & Kaş Alay, 2022; Milli Eğitim Bakanlığı, 2018). Chronic disease, on the other hand, is defined as a condition that generally lasts for 1 year or longer and requires continuous medical intervention or that limits activities of daily living or both (Centers for Disease Control and Prevention-CDC, 2022). Asthma, diabetes, familial Mediterranean fever, celiac disease, epilepsy, hypothyroidism, congenital heart disease, and rheumatoid arthritis are examples of some chronic diseases (Kaş Alay, 2023).

Long-term care of a sick child can have negative physical, economic, psychological, and social consequences for parents. These negative results may prevent caregivers from contributing to society and may deteriorate their financial situation and family relations (Çulhacik et al., 2020; Lai, 2012; Rasoulpoor et al., 2023). Having a child with special needs or a chronic illness creates a situation different from the parents' expectations about the future, adding a burden to parents, especially mothers, in all aspects (Homan et al., 2020). In addition, a sudden change in the lifestyle that the family is accustomed to can cause problems between parents and have adverse effects on family relations (Şengül & Baykan, 2013; Yıldırım et al., 2013). It is logically assumed that these effects will increase caregiver burden, decrease resilience, and negatively affect caregivers' quality of life (Çulhacik et al., 2020; Keniş-Coşkun et al., 2020).

It is known that parents of a child with a chronic disease (PCCD) experience psychosocial difficulties compared with parents of healthy children (Homan et al., 2020). Also, the burden of care for family members increases due to the frequent and long-term hospitalization of children with chronic diseases (Aldem-Budak & Geçkil, 2020). It has been stated that parents with children with special needs (PCSN) show psychological symptoms (Şengül & Baykan, 2013; Yıldırım et al., 2013) and that besides these psychological symptoms, there may be limitations in the daily life activities of caregivers (Çulhacik et al., 2020). The level of limitations in daily life and quality of life depends on the disease and the level of functional independence of the child being cared for (Javalkar et al., 2017). Especially in patients in whom the level of physical disability is high and the level of independence is low, the burden of care becomes more of a physical burden and increases. Furthermore, the burden of care is higher in the case of disability due to cognitive and mental inadequacy (Javalkar et al., 2017).

To the authors' knowledge, there is no study in the literature comparing the care burden and resilience of PCSN, and the burden of care and resilience of PCCD. Accordingly, the study aimed to compare care burden and resilience levels in parents of children with special needs and chronic diseases. Our hypotheses for this were as follows: The care burden of PCSN would be higher than that of PCCD (H1 hypothesis), and the resilience of PCSN would be lower than PCCD (H2 hypothesis).

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