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. Implications for rehabilitation When therapists meet the whole family's needs through a family-centered approach, the child with disability is less likely to be ignored, maltreated or abused. Family-centered practice adopts a sociocultural model which looks at the child from a wider point of view rather than just the disability itself. It requires therapists to review the context in which the child lives and address the specific needs of parents, siblings and other involved family members. Culture plays a huge role in shaping the family's perspective on disability and has a huge impact and implications for service delivery and development, quality of life and participation for children with disability and their families. Rehabilitation professionals must accommodate their time schedules to provide families with the communication, education, advocacy and consultations needed.