Determining the caregiving burden and associated factors in parents of children with intellectual disabilities

Intellectual disability is a neurodevelopmental disorder that begins during developmental stages and causes limitations in intellectual functioning. The families of children with intellectual disabilities are affected by this chronic and irreversible condition. Although there have been numerous studies assessing the caregiver burden in chronic medical and psychiatric illnesses, data on Intellectual Disability (ID), which has a chronic course and requires lifelong care, is limited. This study aims to evaluate the caregiver burden, levels of depression, and social adjustment in caregivers of children and adolescents diagnosed with ID and examine the factors influencing these variables. The research sample consists of children aged 6-17 diagnosed with ID who presented to the Child and Adolescent Psychiatry outpatient clinics at Pamukkale University Medical Faculty. The study included 90 cases and their primary caregiver parents, who were asked to complete the Zarit Burden Interview, Social Adjustment Self-Evaluation Scale, and Beck Depression Inventory. Additionally, the Schedule for Affective Disorders and Schizophrenia for School-Age Children-Present and Lifetime Version-DSM-5 (K-SADS-PL-DSM-5) in Turkish was administered to determine comorbid diagnoses. A questionnaire covering sociodemographic characteristics was completed by the researcher through face-to-face interviews with the parents. As a result of our study, it was determined that the majority of children diagnosed with ID had mild ID, and the severity of ID did not have an impact on caregiver burden, depression levels, or social adjustment. There was a positive correlation between the ages of children and adolescents and social adjustment. It was found that the number of comorbid psychiatric diagnoses was correlated to caregiver burden and depression levels. The presence of comorbid Conduct Disorder and/or Oppositional Defiant Disorder was associated with increased caregiver burden, depressive symptoms, and impaired social adjustment. It was found that caregivers of individuals using medication experienced increased caregiver burden, higher levels of depressive symptoms, and impaired social adjustment compared to non-users. An increase in caregiver burden and depression levels was associated with antipsychotic use, while only an increase in caregiver burden was associated with antiepileptic use. There was a negative correlation between the Social Adjustment Self-Evaluation Scale and the Beck Depression Inventory and the Zarit Burden Interview scores, and a positive correlation between the Beck Depression Inventory and the Zarit Burden Interview. In conclusion, our study is important for evaluating caregiver burden, depression levels, and social adjustment in caregivers of children and adolescents diagnosed with ID. Identifying and supporting the needs of caregivers, providing them with psychological support, and treating comorbid conditions can be beneficial for caregiver and patient health. Keywords: Intellectual Disability, caregiver burden, social adjustment, depression