When Death Becomes a Wish: Lived Experiences of Jordanian Mothers Caring for a Child With a Disability Open Access

BACKGROUND: Caring for a child with a disability in the family is associated with a major increase in caregiving demands and burden. In Jordan, to the best of authors’ knowledge, there is no single study that has explored the life experiences of Jordanian families caring for a child with a disability.

PURPOSE: This qualitative study explores and describes the perspectives, challenges, and adaptations of Jordanian mothers living with a child with a disability.

DESIGN: Phenomenological qualitative tradition was utilized.

PARTICIPANTS: Seven information-rich Jordanian mothers of children with disabilities seeking care from local community health center

METHOD: Interviews using a semistructured interview guide were conducted and audio recorded, transcribed verbatim, and coded line by line into relevant categories.

ANALYSIS: Interpretive phenomenological analysis was used to extract main themes and subthemes out of the interviews, and domain analysis was used to understand certain cultural terms and language symbols.

RESULTS: Mothers' experiences were reflected in four main themes: (1) stigma, including stigma victims and sources; (2) fear for the future, including fear of the mother’s death before the child’s, raising a female child with a disability, and lack of transitioning resources when the child with a disability gets older; (3) caregiving burden, including physical, financial, social, and psychological burdens; and (4) adaptations to the child’s disability, including spirituality and family support.

DISCUSSION: Jordanian mothers caring for children with disabilities face huge challenges that may affect their well-being and that of their children. Many of these challenges are rooted within the culture itself. Health care professionals caring for these children need to recognize the caregivers’ and the families’ needs holistically.

CONCLUSION: As a developing country, Jordan still requires work on and improvement in the quality of rehabilitation services, physical accessibility, educational and vocational placements, and community integration services that are scarcely provided.

IMPACT STATEMENT: Health care professionals must deal with the child’s disability from a family and cultural perspective. Professionals must accommodate their time schedules to provide families with the communication, education, advocacy, and consultations needed. When these needs are acknowledged and addressed, the child with disability is less likely to be ignored, abused, or maltreated.