Investigation of the quality of life and caring burden of the individuals that provide care service to individuals with autism spectrum disorder

Autism spectrum disorder (ASD) is the leading developmental problem. Symptoms of autism start to appear at the age of two. The main symptoms of ASD are distancing from social and real life and avoidance in the communication process. Individuals with ASD need to be cared by other individuals because they have difficulty in meeting their needs on their own. Caretakers providing care services for people diagnosed with ASD suffer from workload resulting from the care they provide. Moreover, as caregivers are distanced from social life and cannot spare time for themselves; thus, the quality of their live starts to deteriorate. The purpose of the current study is to investigate the life quality and caring burden of the people offering care services to the individuals suffering from autism spectrum disorder. The study was designed in the relational survey model. The study group of the current research is comprised of the mothers of 207 individuals diagnosed with ASD and attending special education institutions. In the current study, a personal information form and "The Burden Interview" adapted to Turkish by İnci (2006) and "Parent Form of Life Quality in Autism Scale" adapted to Turkish by Gürbüz Özgür, Aksu and Eser (2017) were used as the data collection tools. In the analysis of the collected data, as the data set showed a normal distribution, parametric tests (t-test, ANOVA, Pearson Correlation analysis) were used. At the end of the study, the caring burden of the people providing care for the individuals with ASD was found to be "medium". No significant correlation was found between the caregivers' age, education level, marital status, gender of the individual cared, age of the individual cared, intimacy of the relationship between the caregiver and the person cared and the burden scores. However, a significant correlation was found between the gender of the caregiver, occupation of the caregiver and the length of the care giving period and the burden scores. In terms of gender, "females" were found to be feeling more burdened, in terms of occupation, "housewives" were found to be feeling more burdened and in terms of the length of the care giving period, the ones who have been giving care for "1 year or less" were found to be feeling less burdened. The life quality of the individuals providing care for the individuals with ASD was found to be "medium". No significant correlation was found between the caregivers' age, gender, education level, marital status, gender of the individual cared, age of the individual cared, intimacy of the relationship between the caregiver and the person cared and the length of care giving period and the life quality scores. However, a significant correlation was found between the occupation of the caregiver and the life quality scores. In terms of the occupation, "housewives" were found to be feeling more burdened. No significant correlation was found between the caregivers' care-induced burden and life quality.