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

Vitrectomy is one of the mainstays of DR treatment. However, patients are only able to recover or retain partial useful vision after surgery, and most patients continue to have psychological, emotional, and social problems [2, 10]. Meanwhile, visual impairment due to DR has a huge impact on quality of life and can cause concern and emotional distress by limiting mobility, activity, and socialization [11, 12]. According to statistics, almost 25% and 13.5% of patients with DR show symptoms of depression and anxiety, respectively, in China [13]. The psychological, emotional, and social problems are more prominent in patients with PDR [14], which may reduce compliance, reduce the level of blood glucose management, and accelerate disease progression in patients with DR [15]. Therefore, the psychosocial situation of DR patients requires attention to meet their relevant needs.

Until now, many studies have focused on interventions for patients with DR and their effectiveness [16, 17]. Some studies explored the disease-related experiences of DR patients [18, 19]. However, little is known about the full cycle of experiences of DR patients treated by vitrectomy during the hospital-to-home in China. Cameron and Gignac (2008) proposed the theory of “Timing It Right” (TIR) [20], which divided the disease process into five stages: (1) event/diagnosis, (2) stabilization, (3) preparation, (4) implementation and (5) adaptation. The first two phases occur during acute care, the third occurs during acute care and/or inpatient rehabilitation, and the final two phases occur in the hospital-family community. Each stage focuses on information, emotion, tools, and assessment needs, and further emphasizes that patients’ care needs vary with time. Using the TIR theoretical framework and a qualitative approach allow for a better understanding of the experiences and feelings of DR patients from their perspective during disease different stages, thus enabling the needs of DR patients to be more fully responded to.

Therefore, this study aims to explore the experiences and feelings of DR patients during different disease treatment stages through in-depth interviews based on the theory of “Timing It Right”. This is helpful to provide a reference for formulating effective and sustainable hospital-family holistic care intervention programs.

This study was part of a larger research project to develop a hospital-family holistic caring intervention program for patients with DR and discuss the effect of its application on DR patients through a quasi-experimental study.

The primary objective of this qualitative study was to explore the experiences and feelings of DR patients at different phases and understand their relevant needs.

To provide a reference for formulating the intervention program that meets the needs of these patients.

This qualitative design was adopted using the Descriptive Phenomenology approach. Descriptive phenomenology emphasizes a process of “returning to the thing itself” and gives more attention to the life experience of patients, which helps to explore the experiences and feelings of patients[21]. Since the study focused on exploring the experiences and feelings of patients with DR in different phases, the descriptive phenomenology research methodology was appropriate.

Patients with DR were voluntarily recruited from the Fundus Surgical Department, Eye Hospital of Wenzhou Medical University, Zhejiang, China. Purposeful sampling combined with a maximum variation sampling approach was utilized. Participants with different sociodemographic characteristics were chosen when possible.

Recruitment of participants continued until data saturation was reached [22], which occurred with the 7th, 12th, 12th, 11th and 10th participants for each phase respectively; two researchers agreed no new themes were identified from the interview data. The inclusion criteria were (1) met the relevant diagnostic criteria for DR in the Clinical Diagnosis and Treatment Guidelines for DR in China [23], (2) underwent elective vitrectomy, (3) age ≥ 18 years, (4) had normal verbal communication skills and (5) voluntary participation in this study. Exclusion criteria were (1) other eye diseases or a history of ocular trauma, (2) severe cardiovascular disease or serious organic disease, (3) cognitive impairment, mental disorder, or not fully capable of acting and (4) being receiving or having received care interventions for other chronic diseases.

Based on the TIR framework, combined with the characteristics of DR and vitrectomy, and consulting with specialists in the Fundus Surgical Department, Endocrinology Department and other related fields, five phases were designated: pre-surgery, post-surgery, discharge preparation, discharge adjustment, and discharge adaptation. The pre-surgical period was from the time the DR patient decided to undergo vitrectomy to the time of surgery and this period usually lasted 3–7 d. The post-surgery phase was the period between the patient’s surgery and post-surgery stabilization. This period usually lasted 1–2 d. The discharge preparation phase was from the time the patient achieved medical criteria for hospital discharge to the time of discharge, and usually lasted 1 d. The discharge adjustment phase was the period from the patient’s discharge to home until 3 months after the vitrectomy. The discharge adaptation phase was the period 3 months to 6 months after the vitrectomy. According to the short hospitalization period and quick turnaround of DR patients undergoing vitrectomy, the post-surgery and discharge preparation phases were the same patient. There was no duplication in the other phases of participants. Each phase was denoted as A, B, C, and D. The staging criterion was based on the most diseased eye.

A semi-structured interview guide (Table 1) was used to collect information through face-to-face interviews. This interview guide was developed by the physicians, nurses, and patients and was based on a literature review and project team discussions. The final interview guide was revised after consultation with qualitative nursing experts and fundus surgical specialists, and pre-interviews with three patients. All the interviews were conducted by a postgraduate nursing student who was trained in qualitative research. A research assistant played an auxiliary role which included recording the interviews.

Patients who were interested in participating in the study and met the inclusion criteria were informed of the purpose and significance of the study and signed an informed consent form. The interview consisted of five phases. The first interview phase occurred during the pre-hospitalization period and was conducted in the outpatient waiting room. The second and third phases were conducted during the inpatient period, the interview location was a quiet place such as a ward or duty room, and the interview time was during non-treatment and patient rest periods. Patients had returned to the community during the latter two phases and when convenient the latter two interviews were conducted in the outpatient waiting room at the time of patient review or were recorded by video. Each person was interviewed one time, and each interview lasted approximately 20–40 min. The entire interview was recorded, and the researcher listened carefully and recorded the interviewees’ expressions, movements, and emotional reactions.

Ethical approval for this study was granted by the ethics committee of the hospital (approval number: 2022-045-K-30-01). Informed consent was provided and obtained from all participants before the study commenced. To protect the privacy of interviewees, the interviews were presented anonymously, and names were replaced with letters.

The recordings were transcribed word by word within 24 h after the interview. Colaizzi’s seven-step method was used for data analysis [24]: (1) reading all interview materials carefully, (2) extracting and labelling meaningful statements, (3) coding meaningful statements preliminarily, (4) classifying the codes into themes and subthemes, (5) merging the formed themes with the research content and describing them in detail, (6) discussing the structural framework of the experience and the feelings of the patients with DR at different phases and (7) returning the theme to the interviewee for confirmation. Two female researchers independently analysed and coded the original data. In case of disagreements, the group discussed and reached a consensus. The data were analysed using NVivo 12.0.

The trustworthiness of this qualitative study was ensured by maintaining the credibility, dependability, confirmability, and transferability of the data [25, 26]. The study interviewer was a master’s degree student in nursing. The interviewer received systematic qualitative training to master qualitative research methods, was experienced in eye hospital practices, and established a good relationship with the patients before the interviews commenced. This facilitated the acquisition of real information. The researcher maintained a neutral attitude during the interview, did not lead or hint, did not interrupt the interviewee at will, and only asked timely follow-up questions, rhetorical questions, and clarifications until no new information emerged. Therefore, credibility was ensured. The collection, analysis, and interpretation of data were continually reviewed and detailed to ensure its dependability. The data extracted from the survey results were described in detail to achieve confirmability. Regarding transferability, this study described in detail the inclusion criteria, exclusion criteria, and demographic characteristics involved. Simultaneously, the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used to report the findings [27] (See Appendix I for details).

The results of the study show that when DR patients have fundus haemorrhage, patients will experience sudden blurred vision, dark shadows and other subjective feelings, which often make patients feel fear and anxiety. This is consistent with the findings of Shi et al. [18]. At the same time, DR is characterized by complex treatment, long disease course, and unsatisfactory efficacy. Multiple repeated treatments leave a psychological shadow on the patients, which makes them fearful of the next surgical treatment. The emotional response of DR patients not only affects their treatment effect but also influences disease prognosis and accelerates disease progression [29]. Therefore, healthcare professionals should comfort and care for patients, guide them to vent their negative emotions and relieve their fear and anxiety. Additionally, they should communicate with patients promptly, inform them of the causes, risk factors, treatment methods and relevant prognostic information, reduce their fear of follow-up treatment and improve their coping ability.

Additionally, DR patients become concerned about the surgical effect, disease prognosis and outcome in the post-surgery phase, with an increased sense of uncertainty. During the discharge adjustment period, the persistent low vision distress and the discomfort of special body positions make DR patients feel negative emotions such as anxiety and depression. Their mental health is impaired. Some DR patients in the adaptation phase after secondary surgery still have poor postoperative outcomes. They have their hopes dashed, show a loss of confidence in continuing treatment and a gradual loss of interest in life, and reach their lowest point emotionally. However, the psychology of DR patients is closely related to their self-care ability, blood glucose management and disease prognosis [29, 30]. Therefore, we must address the psychology of DR patients, focusing on DR patients with persistent low vision distress. Various methods should be used to alleviate patients’ negative emotions, such as cognitive behavioural therapy to assess and identify patients’ negative thoughts and help them to effectively overcome their negative thoughts [31]; as well as the emotional freedom technique to encourage DR patients to tap on acupoints to quickly release their negative emotions [32]. Simultaneously, it is also possible to hold patient meetings, to use the power of peer support to promote mutual communication with each other, to carry out emotional catharsis, and to relieve their negative emotions [33].

The results of this study showed that patients mostly expressed the importance of their eyes, the inconvenience caused by their limited vision, and their determination to make changes for their eyes in the discharge preparation phase. They planned to regularly review and manage their blood glucose. This high level of self-confidence in DR patients who decide to make changes to maintain their vision is called self-efficacy. Self-efficacy has a beneficial effect on both glycaemic control and quality of life in DR patients [34]. The study also showed that DR patients had a high level of self-efficacy during the discharge preparation phase and were determined to change. They actively explored self-care modalities that were appropriate for them during the adjustment period. However, the long disease course of DM, the severe complications and the complexity of self-management behaviours make patients with DM prone to diminished self-efficacy [35]. Therefore, during the post-discharge, adjustment and adaptation period, healthcare professionals should conduct activities such as continuous empowerment and supportive education for DR patients from the perspective of self-efficacy [36, 37]. The aim is to involve patients in healthcare decision-making, help them to establish correct perceptions, make self-decisions, conduct self-manage and improve their quality of life.

This study found that from the discharge preparation period, DR patients questioned their self-care ability and showed a strong desire for DR knowledge and skills guidance. During the adjustment period, some DR patients expressed the futility of seeking help and demonstrated self-care helplessness at home. They hope to receive continuous and professional care guidance through diversified forms of guidance such as WeChat, telephone, and online lectures. Studies have confirmed that DR patients are prone to complications such as bleeding, infection and increased IOP in the early postoperative period. Moreover, improper postoperative care also increases the risk of recurrent retinal detachment, late recurrent vitreous haemorrhage and related secondary surgery [38, 39]. Therefore, attention should be paid to improving the self-care ability of patients. Healthcare professionals should develop appropriate disease knowledge instruction plans for DR patients at different stages of the disease and provide DR knowledge and skills instruction through multiple channels such as oral, written, video, and audio. In the discharge preparation phase, patients should be evaluated using a self-care ability scale and personalized guidance provided based on assessment results to help them make the transition from hospital to home care [40]. Diversified information exchange is carried out after discharge, and multimedia mobile platforms are fully utilized, such as WeChat public platform and WeChat group to push relevant knowledge and to provide online question-and-answer services. At the same time, patients are regularly evaluated and instructed on their self-care ability by combining outpatient diabetes specialists, case management, home visits and remote follow-ups.

This study found that DR patients face many difficulties in-home care, such as basic diabetic care, eye care, and mental adjustments which are aggravated by persistent impaired vision. They are very eager to receive professional help in many ways. The care of patients with DR involves multiple disciplines such as ophthalmology, endocrinology, and nutrition. A previous study implemented multidisciplinary teamwork continuity of care for patients with DR, and it improved their blood glucose levels and quality of life [41]. Therefore, nursing staff should actively play a leading role in building a multidisciplinary team, providing continuity of care services, and discussing and developing vision maintenance, blood glucose management and follow-up treatment plans with ophthalmologists, endocrinologists, optometrists, dieticians and psychological counsellors. At the same time, the active role of specialist nurses is critical. Monthly telephone follow-ups and home visits are conducted by diabetic and ophthalmic specialist nurses to truly develop and implement continuity of care plans. Additionally, multidisciplinary outpatient clinics should be actively created, the construction of the hospital-community-family care model strengthened, and a comprehensive social support system to provide quality and efficient continuity of care services for DR patients established.

This study had several limitations. First, the interviewees were limited to one tertiary teaching hospital for collection and the results may not be generalizable. Further surveys could be selected for sampling in non-tertiary hospitals. Second, this study only interviewed DR patients, and the generalization of the results may not be comprehensive. Follow-up studies are needed to further understand the relevant experiences of healthcare professionals and caregivers of DR patients, to gain a deeper understanding of the needs of DR patients, and to provide a higher quality and more comprehensive basis for the development of relevant nursing intervention programs. Third, considering the short hospitalization period of DR patients in this hospital, the same patients were interviewed in the post-surgery phase and discharge preparation phase, which may cause some recall bias. The results can be supplemented by future studies in wards that do not use the day surgery model.