The experience of diabetic retinopathy patients during hospital-to-home full-cycle care: A qualitative study

Abstract

Background Diabetic retinopathy (DR) is one of the major blinding eye diseases worldwide. Psychological, emotional and social problems of DR patients are prominent. The aim of this study is to explore the experiences of patients with different phases of DR from hospital to home based on the “Timing It Right” framework, and to provide a reference for formulating corresponding intervention strategies. Methods The phenomenological method and semi-structured interviews were used in this study. A total of 40 patients with DR in different phases were recruited from a tertiary eye hospital between April and August 2022. Colaizzi’s analysis method was used to analyse the interview data. Results Based on the “Timing It Right” framework, different experiences in five phases of DR before and after Pars Plana Vitrectomy (PPV) were extracted. The patients experienced complicated emotional reactions and inadequate coping skills during the pre-surgery phase, increased uncertainty during the post-surgery phase, insufficient confidence and the decision to change during the discharge preparation phase, eagerness for professional support and moving forward in exploration during the discharge adjustment phase, and courageous acceptance and positive integration during the discharge adaptation phase. Conclusion The experiences of DR patients with vitrectomy in different phases of disease are ever-changing, and medical staff should provide personalized support and guidance to help DR patients get through the hard times smoothly and enhance the quality of hospital-family holistic care.

Diabetes Distress Among Patients Undergoing Surgery for Diabetic Retinopathy and Associated Factors: A Cross-Sectional Survey

“…As a result, they may experience greater social and emotional strain. Meanwhile, Zhang 15 showed that DR surgery patients have strong emotional responses both before and after surgery, such as pre-surgery fear and worry, regret and self-blame, shadows and daunt, and post-surgery uncertainty about the disease, all of which exacerbate their psychological distress. In conclusion, DD is a serious behavioural-psychological condition and should receive attention from health care professionals, especially in patients undergoing surgery for DR.…”

“…Treatment requires tremendous energy and financial resources, which imposes heavy care and financial burdens on patients and their families. 15 In addition, most of the study participants were young or middle-aged. The social roles of DR patients in this age group are more complex, as they are both sons and daughters and parents.…”

“…The uncertainty of the disease prognosis, the uncertainty of the time of the second surgery, and the discomfort of the special position all increase negative emotions such as anxiety, depression, and psychological distress. 15 However, at present, the studies related to DD have mostly focused on diabetic patients, with only a few focusing on DR surgery patients, especially on DD at discharge of DR surgery patients, and these studies have limitations such as narrow sampling regions and small sample sizes. 8,14 Diabetic patients need more support, including family support and social support.…”

“…As a result, they may experience greater social and emotional strain. Meanwhile, Zhang 15 showed that DR surgery patients have strong emotional responses both before and after surgery, such as pre-surgery fear and worry, regret and self-blame, shadows and daunt, and post-surgery uncertainty about the disease, all of which exacerbate their psychological distress.…”