Healthcare, school and daily life experiences of patients with microphthalmia or anophthalmia and their parents.

ABSTRACT:

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

SUBMITTER: Chireh E 

PROVIDER: S-EPMC11828725 | biostudies-literature | 2025 Mar

REPOSITORIES: biostudies-literature