PurposeHaving a child with congenital cataract that requires surgery, contact lens treatment, and frequent medication is a life‐altering experience. The aim of this study was to provide more in‐depth knowledge of parents’ experiences of diagnosis, surgery, and subsequent care, in order to find the areas for improvement.MethodsData were collected via semi‐structured interviews with parents recruited from St. Erik Eye Hospital, Sweden. The children were operated for congenital cataract before 3 months of age and were aged 12–24 months at the time of the interviews. The interviews were analysed using qualitative content analysis with an inductive approach.ResultsThree themes emerged from the data: living in a turbulent time before the diagnosis, coping during the time of initial treatment, and managing the responsibility of their child’s visual development. All parents expressed confidence in the operating unit. However, there was a clear need for reliable information on the condition, the surgery, and likely the long‐term outcome in the time between receiving the preliminary diagnosis at the maternity ward and getting it confirmed by a paediatric ophthalmologist.ConclusionMuch of the parents’ concern in this turbulent time is linked to poor information before the visit to the eye hospital. We, therefore, recommend earlier contact with the eye hospital, preferably at the time of writing the referral. Moreover, the possibility of providing up‐to‐date information via alternative information channels such as smartphone apps should be investigated.

The in vivo results demonstrate minor effects of the ophthalmic solutions on the worn lenses. These results do not support the building up of preservatives and drugs on the contact lenses as the cause of pain or discomfort experienced by some patients, which is encouraging for the use of bandage lenses in combination with ophthalmic solutions.

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.