Lived experience of mothers of children with disabilities: a qualitative study of Iran

Having a child with disabilities at home poses many problems and tensions for all family members to various degrees. However, mothers are the ones most at risk of issues arising from caring for children with disabilities, due to their stronger emotional relationships. Therefore, the present study aimed to investigate the lived experience of mothers of children with disabilities in Iran. In this qualitative phenomenological study, the statistical population consisted of mothers of children with disabilities residing in Tehran, the capital city of Iran, from which 17 subjects were selected through targeted sampling and studied using in-depth interviewing. Sampling continued to the point of data saturation, and simultaneous with interviews, Colaizzi’s method was applied for data analysis. The results of the present study revealed that the lived experience of mothers of children with disabilities included two main themes, namely inter-personal experiences and social experiences. It was also demonstrated that the lived experience of mothers of children with disabilities had eight sub-themes: feelings of guilt, loss of opportunities, maternal sacrifice, worrying about the future, feelings of guilt about other children, social isolation, lack of socioeconomic support, and stigma. The results of the present study provide a framework for understanding the life problems of mothers with children with disabilities, and could be used for supporting mothers emotionally and socially, and for improving their lifestyles.