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

Abstract

Aim: Comparison of care burden and resilience levels in parents of children with special needs and chronic diseases.

Methods: This study, designed with a cross-sectional and relationship-seeking design, was conducted in a Training and Research Hospital in Turkey. Data was obtained from parents of children with special needs (n = 102) and chronic diseases (n = 102) who presented to the outpatient clinic for routine follow-up between October 2022 and February 2023. The consecutive sampling method was used while choosing the sample. The "Descriptive Characteristics Questionnaire," "Zarit Caregiver Burden Scale (ZCB)," and "Resilience Scale for Adults (RSA)" were used to collect data. Data were evaluated using the SPSS 22.0 statistical program.

Results: The burden of care in parents differed significantly between the two groups (p < 0.001), the majority of parents of children with chronic diseases (PCCD) had a mild/moderate care burden, and the majority of parents of children with special needs (PCSN) had a moderate/severe level of care. The care burden scores and total resilience scores were found to be higher in the PCSN group, and the care burden scores and total resilience scores were found to be lower in the PCCD group (p < 0.001).

Conclusion: This research determined that PCSN showed more care burden and less resilience than PCCD. In this context, it is recommended to regularly monitor the resilience, caregiver burden, and quality of life of caregivers of children with special needs and conduct preventive and strengthening programs.

Keywords: Care burden; Child; Chronic disease; Parent; Resilience; Special needs children.