Understanding Family-centered Care and Related Factors From the Perspective of Mothers of Children With Autism Spectrum Disorder

Abstract

Introduction: Autism spectrum disorder (ASD) presents numerous challenges for families with affected children due to communication and social interaction difficulties. Adopting a family-centered care approach can enhance the quality of care and increase the satisfaction of families seeking medical services for children with ASD. Objective: This study aims to assess the status of family-centered care and its related factors among mothers of children with ASD in Rasht City, Iran. Materials and Methods: A cross-sectional analytical study was conducted on 183 mothers of children with ASD in Rasht, utilizing a census approach at Guilan Welfare Centres in September 2020. Data collection tools involved questionnaires on individual-family characteristics and the measure of processes of care, a 20-item questionnaire, which was validated and reliable. Descriptive and inferential statistics, including the Pearson test, independent t-test, analyses of variance, and multiple linear regression, were used for data analysis. Results: Out of 183 participants (69.31%), met the study criteria most mothers held a diploma (41%) and were housewives (74.3%). The scores for “empowerment and partnership” and “general information” aspects were below mean score, while “specific information”, “comprehensiveness and coordination” of services, and “respect and support” aspects received scores above mean score. The aspect of “specific information” received the highest score (55.4±16.2), while the “general information” aspect received the lowest (45.3±88.1). The regression model revealed that the child’s gender (B=-0.58, 95% CI, -1.07% to 0.001%, P=0.001), sufficiency of health insurance (B=-1.19, 95% CI, -2.17% to -0.21%, P=0.017), and severity of ASD (B=-1.25, 95% CI, -2.46% to -0.04%, P=0.042) significantly influenced empowerment and participation, general information, and specific information aspects. The family residence also impacted the aspect of respect and support (B=-1.24, 95% CI, 0.57% to 1.17%, P=0.001). Conclusion: The study findings revealed that mothers’ understanding of family-centered care in empowerment/participation and general information was below mean score. This finding highlights the importance of focusing on family-oriented approaches while providing services and care to families with children with ASD.