PURPOSE: To explore parents' experiences of living with a child with congenital cataract, with the intention of identifying how to improve the parental support.

DESIGN AND METHOD: A qualitative descriptive design using semi-structured interviews. The parents were interviewed when the children were aged 12-24 months. All children were operated on for congenital cataract before three months of age. The interviews were transcribed and analysed using qualitative content analysis with an inductive approach. Findings were reported following the Standard for Reporting Qualitative Research (SRQR) checklist.

RESULTS: Three categories emerged from the data: trying to survive during a chaotic time; adapting to a different normal; being in need of support. When receiving the preliminary diagnosis, most of the parents were upset but managed well once the initial shock had subsided. However, some described feelings of despair, difficulties in accepting the situation and in connecting with the child. All parents stated that, to be valuable, a counsellor needed to have insights in how the eye works and the function of visual development.

CONCLUSION: The parents' need for psychosocial support in the early post-diagnostic stage varied greatly. Early identification of those in need of specialized counselling is therefore of importance, preferably at the maternity ward or by the regional ophthalmologist when the referral is made.

CLINICAL IMPLICATIONS: The study provides understanding of the importance to take the parents' well-being beyond the medical issues into consideration. This knowledge can be used to provide support at an earlier stage in the treatment programme than is currently the case.