Lived experiences of Jordanian mothers caring for a child with disability

Abstract

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.

Keywords:

• Culture
• stigma
• qualitative methodology
• phenomenology
• Arab
• care-giving burden

Acknowledgements

The authors would like to acknowledge all mothers of children with disability who participated in the study for their courage to share their stories. This study would not have been possible without their help. Also, the authors would like to gratefully acknowledge Ms. Hebah Kaljah, RN for her assistance during the data collection process, Mrs. Reham Al-Shorafa, PT for her assistance during the data analysis and literature search and Ms. Naela Bjouho, PT for her editorial assistance.

Disclosure statement

All authors report no conflict of interest.