The Core of Parents' Main Concerns When Having a Child With Cataract and Its Clinical Implications

Abstract

Purpose: To investigate the main concerns associated with being a parent of a child with cataract and how the parents deal with these concerns.

Design and method: Twenty-three parents; 6 mothers, 5 fathers and 6 couples with a child with cataract were included in this study. The parents included some with a personal experience of cataract and some without. Data was collected through 17 in-depth interviews, which were recorded and transcribed verbatim for analysis by the method of Grounded Theory developed by Charmaz.

Results: The Grounded Theory describes the parents' efforts to balance the child's inability and ability in order to maintain their social functioning and lead a normal life through a process comprising four main categories; Mastering, Collaborating, Facilitating, and Adapting. This process makes the path of transition evident, starting when the child is diagnosed and continuing for several years during her/his growth and development.

Conclusion: The core of parent-child interaction is mastering the balance between the child's disability and ability in order to achieve the best possible outcome, visually and habitually. The interactions changes through a process towards adjustment and acceptance. All the parents emphasized that you do what you have to do to achieve a successful visual outcome of the child.

Clinical implications: The model provides a comprehensive understanding of parental self-management that can be used by a case manager, preferable a nurse, to pilot the parents through the process.

Keywords: Adaptation; Grounded Theory; Parents; Pediatric cataract; Transition.