Theme 1: Awareness on DR.

This theme includes three sub-themes including the knowledge and concern about DR, symptom experiences and factors influence DR, and possible impacts of DR.

Knowledge and concern about DR: Almost of the patients involved in this study were familiar with diabetes however, understanding about DR was not a common thing even though they were living with the disease for many years. According to 4 patients, they understood that DR is related with diabetes and they aware that diabetes could affect the eyes. Others reported that they have heard about DR but they only concerned about their kidney. One male patient says.

“Diabetes is the disease that we should not joke about, it affected the whole parts of the body, firstly my legs were amputated and now my eyes were going to blind.... I encouraged my friends who have diabetes to control their blood sugar otherwise they will end up like me”. (PM1, 50 old)

However, many patients mentioned, that they just found out about DR on their first day of diagnosis but they did not know the cause and even the word retinopathy. They conveyed that they just got DR very sudden. Some cited that they came for other eye problem and they found out to have DR. Few patients reported that they were aware of DR from the doctor when they admitted to the hospital, while several patients voiced that they got the disease very sudden. One patient shared her experienced.

“It was very frustrated.... because there is no signal telling you that you should go and check your eyes. I was very surprised when I woke up and my left eye was black out, it like a dark cloud covered......till now I am still frustrated....” (PF9, 52 yrs old)

The majority of patients were realized that DR could lead to blindness however, patients have perceived different levels of sight threatening and emotions, such as patients with severe and moderated DR stages were more high risk to vision loss compared to patients with mild stages. Some patients were depressed and they came with negative thinking. Notwithstanding, patient with mild stages of DR were sound very peaceful.

“When the doctor told me that I got severe DR, I was so sad......cried.......because someday I will not see my children. I always recall my doctor word...that few more time I will totally blind.... I asked God to help me .... the doctor also told me to control my diabetes (PF1,43 yrs old)

Overall, most of the participants with moderate and severe stages of DR were more adhered to their treatment therapy and follow up review because they don’t want to lose their vision. They perceived that vision loss is the most difficult complication of DR. One patient responded;

“I attended the clinic since 2018, for cataract surgery and followed by laser therapy and injection. I was committed because I was afraid to lose my sight, even though I found the laser painful and uncomfortable I still don’t want to miss my appointments”. (PF14, 52 yrs old)

Symptom experience and factors influenced DR: Like many conditions of this nature, DR can occur without any initial symptoms and without pain. A noticeable effect on the vision does not typically occur until the disease advances. Symptoms might only be identified once the disease advances, but the typical symptoms of retinopathy to look out for include, sudden changes in vision/blurred vision, eye floaters and spots, double vision and eye pain.

Overall, blurry vision at both near and distance, double vision, seeing floaters, seeing of black spots and glare were the most common symptoms which patients had experienced whereas some patients haven’t experienced any symptoms and signs of DR. Most of the patients’ main complaints was blurry vision. Others stated that seeing of floaters, dark spots and double vision were other symptoms they were experienced. However, the absent of DR symptoms (asymptomatic) was one of the barriers patients reported which delayed seeking help from the eye clinic. One patient voiced on dark spots symptom;

“It was like a cloud moving in front of my view, I was looking inside the water to let it go but didn’t go away”. (PF6,58 yrs old)

And another patient commented on double vision says;

“The post of the building was double and bending when I looked at it” (PM3, 39 yrs old). Also, a female patient stated that she was uncomfortable when looking under the sun... “The bright light from the sun caused my vision to dark”. (PF11, 47 yrs old)

Furthermore, patients were found related their improper diet with their increased blood sugar level and worsening of DR symptoms. Majority blamed that eating rice was significantly increased their blood sugar level. Few commented on eating sweet food were also increased their blood sugar level and affected their vision. One patient commented about rice;

“I knew that when I ate rice my blood sugar will getting high and my vision also blurry, I tried not to eat rice everyday. (PM4,46 yrs old)

However, patients concluded that strict glucose control, lifestyle modification, compliance to DR treatments and followed advices from HCWs were the only way to subsize the progression of DR.

Possible impacts on daily activities: It was found that moderate and severe stage of DR have significant impact to health relative quality of life. According to 15 patients, they stated that the most affected activities caused by DR include, reading, driving, cooking, sewing, plumping, mechanic, and social interaction with friends. However, for those patients who had not experienced other complications of DR, the threat of vision loss was the most devastating.

According to 3 school teachers (patients) they mentioned that the need to see well especially when reading and the need for special glasses to assist them in reading and preparing their lecture was the most difficult experienced, they cannot imagine. Patient’s responses as followed;

“It was very hard for me to prepare my teaching lessons especially when it comes to the marking”. (PM3, 39 yrs old). Another one says “I put the laptop close to my eyes when I read, it’s very frustrating.” (PF14, 53 yrs old) and the last one spoking, “I have spectacles but my number is keep changing very fast”. (PM8, 52 yrs old)

Few patients stated that loss of independence, especially mobility and increased fear of accidents had a profound impact on social activities. The majority of patients were no longer did heavy tasks at home and just waited for their family to do things for them. One patient mentioned about driving;

“I cannot drive my own car, and it very disappointing because when I want to go somewhere, I need someone to drive me, and if no one available I have to wait and did nothing.... sometimes I missed my appointment because no one can drive me to the hospital...”. (PF9, 53 yrs old)

Also losing of independence resulted from visual impairment was also another devastating for those experienced.

“Diabetes was affected me so much, now I could not go anywhere, having my own baths, getting my own food and anything else that I want to do.” (PM1, 52 yrs old)

Other piercing stories obtained from patients include, losing jobs and other important activities that they used to earn money to support their family. One patient stated;

“I will no longer make smocking for sell and selling of foods as I was afraid to do the cooking and my eyes were so blurry when do the sewing....so we couldn’t support our family anymore even from the little things”. (PF2, 68 yrs old, PF11,47 yrs old)

Overall, it was found that the impact of visual impairment resulted from DR was conspicuous in patients’ thoughts, activities and lives and also truly affected every individual’s quality of life particularly people living with diabetes.

Theme 2: Perceptions toward DR management.

Theme 2 constitutes three subthemes including believe about DR treatment, herbal medicines, and doctor-Patient relationship.

Believe about DR treatment: Over the past years until now, laser therapy and anti-VEGEF injection can substantially improve vision outcomes for patients with clinically significant macular oedema. Overall, this study had discovered that almost patients were just becoming aware of DR treatments include laser and anti-VEGEF injection during their first consultation with ophthalmologist. One patient spoke;

“I just knew that diabetic retinopathy has various types and also aware that it has treatments (laser and injection). If I’m not come to the clinic, I didn’t hear from the doctor about the treatment of diabetic retinopathy” (PM3, 39 yrs old).

The results also presented that many patients were having high expectation that laser and injection could bring back their vision to normal. They compared DR with other eye conditions such as cataract and the need for spectacles. It was also clear from the interview that patients were having no choice to decide for their treatments but they just followed of what the ophthalmologist decided for them. One patient spoking;

“I did not know what the laser and injection did but I trust the doctors when she told me to have either laser or injection because they knew what they doing and they were very intelligence” (PM6, 43 yrs old)

Majority of patients were satisfied about the treatments they were given, while few people were not satisfied and they were asking for other alternatives like overseas treatments, visiting team from overseas and more effective and powerful laser or injections. One patient asking for overseas treatments;

“Do we have a chance to referred to overseas for treatment?......I was heard that there are many specialized doctors they can help with retinopathy diseases......”. (PF7,42 yrs old)

In addition, some patients were perceived that anti-VEGEF injection was better than laser therapy since it was less painful, and cleared their vision more. Responses provided by some patients;

“I had completed 3 sessions for laser and injections and I feel that injection was better.... there were no more dark spots blocking my vision on my right eye but my left eye was still no improvement despite many lasers” (PF5, 59 yrs old).

Another participant stated that;

“I was treating my injection sessions more important because it helped me a lots compared to laser” (PF14, 53 yrs old)

Conversely, patients with timing laser treatments were found the treatment very effective however, it was very painful and discomforting. One patient voiced;

“The laser was good to me; it helped my vision to stable but I was scared of it because it very painful.... but I tried to ignore the pain as I love to see better”. (PF10, 61 yrs old)

Herbal medicines: Over the last few years, herbal medicine was a popular medicine where many people have found to use them to treat their chronic illness include diabetes. However, many studies have found no evidence that herbal medicine could cured diabetes or diabetic retinopathy [20].

According to the interview with patients, it was found that the used of herbal medicines in Kiribati for the treatment of diabetes or DR was not prevalent in most of the participants. The majority reported that they haven’t found yet traditional medicines or herbal medicines for retinopathy. Some patient presented that they only used the non-juice as vitamin substitute but they have no prove that it could lower their sugar level. One patient commented;

“I used the non-juice for my vitamins because buying veggies were too expensive”. (PF10,58 yrs old).

However, it was cleared that using of herbal medicines for the treatment of DR was not a common thing in most patients. They believed that laser and injection were most possible treatment for DR but need lots of time and patience.

Doctor-patients’ relationships: Interview results showed that majority of patients were found satisfied with the services provided by the HCWs. Several patients commented on positive interaction with doctors during their previous visits and treatments and others were reported on their negative experiences with doctors. One of the patients commented on HCWs;

“The doctors and nurses were very kind and helpful, they always give advice to have good control of our diabetes and encouraged us to attend our appointments”. (PF1,41 yrs old).

Another patient voiced on the good experience with doctors;

” The feedbacks from the doctor encouraged me to compliance to my treatments and to control my blood sugar,”. (PM13, 43 yrs old).

Also, another patient was commented on negative experienced with doctors;

“Sometimes doctors were not talked nicely.... maybe they were tired because they have seen lots of patients.... I noticed sometimes they were rushed to see patients and they have no time to explain things......I just came in March and then I didn’t come back because I wanted my bad eye to be treated first but the doctor treated the good one first and I don’t know why... (PF9, 52 yrs old)

Theme 3: Perceived barriers and challenges to diabetic eye care.

Three subthemes formed this theme including education and Knowledge about DR, health care system factors, and access to the services.

Education and knowledge about DR: Most patients during an interview say that they have received enough education about DR given from the doctor and nurses during their diagnosis procedure. However, the transcripts codes indicated that there was, still limited knowledge about DR. Majority just knew that DR was a diabetic eye disease but they did not know how it cause blindness. Many were don’t know that floaters and dot spots were important symptoms of severe DR. Others blamed that lack of education received from HCWs on DR was another reason for not prioritizing their vision. While others say that the eye medical terms were difficult to remember and they recommended HCWs to use posters or eye models when explained about the eye conditions.

One patient response says;

“The doctors and nurses had explained to me about DR and its urgent symptoms, but I cannot remember because the words are complicated”. (PM3,39 yrs old)

Access to the service: Lack of access to eye care service is another common problem mentioned by patients. The results shows that people who were living close to the hospital were having no complaints about their access to the service. However, many patients reported that means of transport and dispersion of the islands were the most important barriers to access the eyecare services. Several patients from far places commented that sometimes they did not turn up to their appointment because they found it hard to get on the public transports. Others cited that travelling in longer distances or residing in rural communities were the most challenging for many people to access the eye care services at the time of need. They also added that attending of the eye care services was also costly for them as they need to travel for long distance. One patient spoking about transport inconvenience;

“Most of the time I have waited for the bus at the road for almost an hour and I just got the chance to get on the public transport......sometimes I got tired and returned home”. (PF6,66 yrs old)

Another patient commented on the cost of travel;

“It cost me a lots to access the eyecare services as I have many travels to do, I was living at one of the islets in Abemama (one of the islands) and I have to travel by boat to the main land and from the main land I have to take the plane to reach the eye clinic. It was very expensive but we don’t have choices and most importantly I need to get helped from the eye clinic”. (PM14,56 yrs old)

Health care system factors: The results presented that majority of patients were complaining about health challenges such as poor referral system, treatment out of stock/medications, length of consultations, missing patient’s folders and lack trained ophthalmologist. One patient commented on the issue with missing folders;

“Sometimes I came in the morning with less patients but I was becoming last to be seen by the doctor because I don’t have my folder....it could take more than an hour for HCWs to look for our cards.......it very frustrating and disappointing”. (PF9, 52 yrs old)

Another patient also spoking about referral system;

“I was working on outer island, and sometimes I need urgent referral to the eye clinic especially when I feel my vision down however, it took time for the nurse to obtain the doctor’s consent for my travel, I wish there is another way that referral from outer island could improve therefore we can get helped as soon as possible” (PM8, 53 yrs old)

Other patients were also commented on the medication availability and poor health education from HCWs during consultations. One patient voiced;

“The problem with medication out of stock was affected us......“our diabetes cannot improve if the hospital couldn’t manage to sustain its stock especially for diabetes medications. (PF10,58 yrs old)

However, these barriers and challenges were associated with the financial constraints within the ministry.

Theme 4: Recommendations to improve DR management.

This theme has supported by 3 sub themes include, resources, advances treatments and the need for more regular awareness.

Resources: Most of patients were cited that the need for more ophthalmologist was the most important thing that the healthcare system should consider. They believed that more professional healthcare workers could help to share the work load and provide more quality and efficient outcome to the patients. Others reported that providing more educational materials like eye posters, eye models were very helpful to patients to easily understand about DR and especially their personal condition. One patient spoking

“Government should support more trainings for HCWs to upgrade their knowledge therefore we don’t need help from overseas”. (PM14,56 yrs old)

Advanced treatments: It was found from the interview that patients with severe DR condition were that most desperate to seek for more advanced treatments compared to those with mild condition. Few patients perceived that the treatment that were given were not really effective and they recommended to send overseas for treatment. Others were commented on the need for more eye teams from overseas to come so they can have the chance to check their eyes. In addition, several patients conveyed that treatment overseas was beneficial for them in fact there were more specialized doctors that could help the problem with retina. One patient spoking;

“Is there anything else can be done here.... beside laser and injection? I was worried because I noticed little improvement with my vision.......and I had heard, that there are doctors in overseas which are more specialized on the blood vessels in the eye.... can we have the chance to be sent to overseas?” (PF7, 42 yrs old)

Routine awareness: Despite routine awareness and regular DR outreach in Kiribati, people’s awareness and understanding about the disease still not common. Suggestions on increasing educational opportunities/awareness of eye care especially on DR were the most frequent response obtained from interviewees. According to some patients they suggested that DR awareness in primary schools could help children to get familiar and understand about DR in their younger age. Other patients recommended that health education during diagnosis procedure and the use of non-medical term helped them to understand more about DR. Few were added that eye model or posters were more easily to understand about DR. Moreover, some patients suggested that community awareness, patients’ participations and ministerial tour were other successful ways to increase peoples’ participation in DR screening. Further suggestions include the availability of the ophthalmologist to see patients on their follow-up/review. One patient voiced;

“I am an English teacher in one of tertiary level and honestly, I didn’t know about DR, just knew when I got it......now I became an advocator for DR in my work place”. (PM3, 39 yrs old)