Parental Experiences on Learning About and Caring for Children with Cleft Lip and Palate: A Qualitative Study from South India

Abstract

Objectives

The study aimed to understand parents’ reactions to cleft, the manner in which they learned about its presence, and the challenges they faced in caring for their child with a view to providing healthcare professionals insights toward enhancing care delivery.

Design

Qualitative in-depth interviews using the grounded theory approach were carried out with 11 mothers and fathers of children with cleft lip and palate (CLP) attending a cleft speciality hospital in Chennai city, in South India.

Results

Analysis resulted in the discovery of 5 core categories, learning about CLP—when and how, reactions and attributions to CLP, learning about and expectations from treatment, caring for a child with CLP and support systems. Feelings of shock and bewilderment when they learned of the presence of cleft in their child was reported by most parents. Poor awareness of cleft, difficulties in feeding, and concerns for the child's future were major sources of disquiet. The presence of support from family and friends and interactions with other parents of children with cleft helped them to cope better.

Conclusions

The results highlight the need for enhancing understanding of cleft among parents and strengthening them emotionally, thereby empowering them to provide effective care for their child. There is an urgent need to develop standardized information materials for parents to ensure that they have clear, consistent, and reliable information on the care of their child.