Written by
Ala'a Al-Awad
Hala Obeidat
Haytham Al-Oran
Rawnaq Almahadeen
Ma'en Abu-Qamar
Abstract
Purpose
To describe the lived experience of Jordanian parents of children with congenital orofacial clefts, explore the challenges facing parents of children with congenital orofacial clefts, and assess the coping mechanisms that the parents use in caring for their children.
Design and methods
The study used a qualitative descriptive phenomenological approach, in which semi-structured interviews were conducted with a purposive sample of 20 parents (2 fathers and 18 mothers) of children from 1 year to 8 years of age with congenital orofacial clefts who come to the Royal Rehabilitation Center for treatment and care. The data were analyzed using Colaizzi's method for qualitative data analysis.
Results
Four distinct themes captured and reflected the lived experience of Jordanian parents who have a child with congenital orofacial clefts: (1) parental emotions and resilience, (2) challenges of parenting, (3) healthcare experiences, and (4) societal perceptions and stigma.
Conclusion
The findings of this study indicate that the experience of parents who have a child with congenital orofacial clefts is stressful due to a lack of awareness among parents and the community about the challenges they face in caring for their children. A robust support system and high-quality healthcare systems help mitigate these challenges.
