Abstract:

Aim: In the literature there has been growing interest in caregiving burden of adults with intellectual disability (ID), following the increase in life expectancy of adults with ID. There is no adequate data concerning the caregiving burden of this age group in Turkey. In this study we aimed to determine family caregiving burden of adults with ID and to investigate the relationship between caregiving burden and various clinical and sociodemographic parameters. Materials and Methods: One-hundred and two adults with ID and their families were included in this study, all of whom were reached through polyclinics, rehabilitation centers, and schools. The data were collected by using a specifically designed, structured form, the Zarit Caregiver Burden Scale, and the Psychiatric Assessment Scale for Adults with Developmental Disabilities. Results: The mean caregiving burden score was 54.68±13.83. The primary factor increasing the caregiving burden was found to be a comorbid diagnosis of an autism spectrum disorder (ASD) in the individual with ID (p=0.001). Presence of behavioral problems was another factor increasing the caregiving burden (p=0.031). The highest caregiving burden score was observed in university graduate caregivers. No significant relationship was found between caregiving burden and gender, age, physical and mental illnesses, incontinence status, physical disability status, community services attendance, and verbal ability level of people with ID as well as the duration of the care given. Discussion and Conclusion: Prevention and appropriate management of behavioral problems, in addition to determining the needs and expectations of families of people with ID on the autism spectrum will be a critical step in lessening the caregiving burden on the families. Another remarkable point is that the highest caregiving burden reported belonged to university-graduate caregivers, who are likely to have a greater awareness of problems

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