Self-management challenges and support needs among patients with primary glaucoma: a qualitative study

BACKGROUND: Self-management plays an important role in the disease management of glaucoma patients. The effectiveness of the program can be improved by assessing the patient’s perspective and needs to tailor self-management support. Most studies have focused on assessing one of these self-management behaviours, such as medication adherence, and there is a lack of systematic assessment of the support needs and challenges of self-management for patients with glaucoma. Therefore, in this study, we conducted an in-depth investigation into the self-management challenges and support needs of patients with primary glaucoma, providing a basis for nursing staff to implement self-management support. METHOD: The phenomenological method and semistructured interviews were used in this study. A total of 20 patients with primary glaucoma were recruited between June and December 2022. Colaizzi’s analysis method was used to analyse the interview data. RESULTS: Challenges for patients include becoming an expert in glaucoma, managing negative emotions, adapting to daily life changes and resuming social activities. To address these challenges, four themes of patient self-management support needs were identified: (1) health information support, (2) social support, (3) psychological support, and (4) daily living support. CONCLUSION: Patients with primary glaucoma experience varying degrees of challenge in dealing with medical, emotional, and social aspects. Comprehending the support needs of patients, healthcare professionals should deliver targeted, personalized and comprehensive self-management interventions to enhance their capacity of patients to perform self-management and improve their quality of life. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12912-023-01527-y.