AIM: This qualitative study explored the lived experiences of the patients with microphthalmia and anophthalmia and their parents, focusing on the healthcare, school settings and daily life challenges to improve patient management. METHODS: In-depth interviews were conducted in Stockholm, Sweden, from October 2022 to June 2023. Participants were recruited through the St Erik Eye Hospital database (2008-2022), and the data was analysed using reflexive thematic analysis. RESULTS: The study included 15 patients (9 female and 6 male), with a median age of 21 years (range 15-31), and 1 parent per patient. Five key themes were identified from the parental interviews and three from the patient interviews. Both groups emphasised the need for improvements in healthcare, including better physician continuity, emotional support, information provision and prosthesis functionality. Families of those with severe bilateral visual impairment highlighted the need for additional school and daily life support. While some parents had future concerns, most patients viewed their condition as a natural part of life. CONCLUSION: Patients and parents shared insights on the psychosocial impact and suggested improvements in the healthcare and school settings, providing valuable guidance for enhancing care and management for this patient group.