Lived experiences of Jordanian mothers caring for a child with disability

Purpose: Caring for a child with a disability in the family is associated with a major increase in care-giving demands and burden. This qualitative study explores the perspectives, challenges and adaptations of Jordanian mothers living with a child with disability. Methods: Phenomenological qualitative tradition was utilized. Seven Jordanian mothers of children with disability were purposefully selected as having rich experiences for caring for a child with a disability. In-depth interviews were conducted using a semi-structured guide, audio-taped and transcribed verbatim. Interpretive phenomenological analysis was used to extract main themes and subthemes. Results: Mothers' experiences were reflected into four main themes: (1) increased perceived stigma, (2) fear for the future, (3) increased perceived care-giving burden and (4) adaptations to the child's disability. Conclusions: This study highlights key gaps in the provision of family-centered services for this population as well as multiple sociocultural issues impacting participation and quality of life. Healthcare professionals must deal with the child's disability from a family-centered and cultural perspective.