Exploring the lived experiences of mothers of disabled children with profound and multiple intellectual disabilities in Saudi Arabia: understanding caregiver empowerment

Introduction: Caring for profound and multiple intellectual disabilities (PIMDs) children presents greater challenges than caring for mild-to-moderate disabilities children. Therefore, the life experiences of mothers, frequently the primary caregivers of such children, constitute a rich source of practical knowledge. This study aimed to examine mothers' perception of empowerment in the context of caring for their children, aiming to enhance the contemporary understanding of empowerment within disability studies through an interpretive perspective based on lived experiences. Methods: A qualitative exploratory design was used, based on semi-structured interviews with 18 mothers of PIMDs children. Result: The results revealed diversity in mothers' perceptions of empowerment, with each mother's understanding linked to her personal context and experience. However, common patterns emerged reflecting similar childcare experiences. The findings were organized into five main dimensions representing the areas of empowerment perceived by mothers. Discussion: The discussion suggests that maternal empowerment is not understood as a static state or a direct result of institutional support but rather as a dynamic process gradually shaped by lived experiences and daily situations. This model is described as the concept of Lived-Experience-Based Empowerment (LEBE). A comparison with prevailing disability models indicates that, although this concept shares some assumptions, it expands upon them by highlighting the pivotal role of lived experience in shaping the meaning of empowerment.