Good glycaemic control: According to the Society of Endocrinology, Metabolism and Diabetes of South Africa, the majority of patients with a glycosylated haemoglobin level < 7% will be considered as having achieved good glycaemic control. This is also supported by the recommendation of the American Diabetes Association.²¹ HBA1c levels above 7% will be regarded as poor glycaemic control in the study.

Critically poor glycaemic control: Levels of glycosylated haemoglobin ≥ 9% is considered to be critically poor in this study.

Rural versus semi-urban community: there is no consistency in the definitions. However, South African government policies refer to rural areas as those that are non-metropolitan.²² They are characterised by inferior infrastructure, low income, poor site conditions, unreliable water availability and poor access to health facilities.²³ Rural areas in South Africa have been defined in relation to poverty, underdevelopment and low habitation.²⁴ The place of residence of participants, other than Mthatha, is classified as rural in this study.

Semi-urban community: based on the pace of urban population growth of rural communities, semi-urban areas share the characteristics of rural-urban communities. Mthatha is considered to be semi-urban in this study.

The aim of this study was to explore the overall knowledge of diabetic patients about diabetes and glycaemic control. It was the second component of a bigger study on diabetes in rural South Africa.

The study was conducted at Mthatha General Hospital, Mthatha, Eastern Cape Province, South Africa. This is a 258-bed district hospital serving a predominantly Xhosa-speaking population of about 1.5 million people.

In order to gain an in-depth understanding of the patients’ perspectives of diabetes and glycaemic control; a qualitative study was conducted using semi-structured open-ended interviews with prompts.

The study was conducted in October and November 2013.

Seventeen purposively selected participants were drawn from the follow-up review of results of participants who took part in the first component, which was a quantitative study. Critical case sampling was employed to track down patients with the worst control of diabetes and high risks for diabetes complications. Participants were selected if their recent glycosylated haemoglobin was ≥ 9%, they were willing to participate in the interview, age ≥ 30 years at diagnosis of DM and had been on treatment for diabetes for a minimum period of at least one year. Participants were excluded from the interview if they were receiving treatment for less than one year or acutely ill at the time of the study.

The interview explored the following key areas of diabetes and glycaemic control: nature of diabetes, complications, treatment targets, medication and access, adherence to treatment and self-care efforts to achieving control.

A trained interviewer used open-ended techniques to elicit in-depth information from the participants. An interview guide was used to ensure that the key questions were asked if they did not arise spontaneously. The interviews were conducted in the local language of the participants (isiXhosa) to ensure that participants were free and confident in their responses. The interviews were audiotaped and the interviewer also kept notes of the process. Recruitment continued until no new information emerged during the interviews (data saturation).

Data analysis: Two experienced qualitative researchers transcribed the audiotaped interviews independently and translated them verbatim. Notes were then compared to ensure accuracy of transcription and translation. Field notes were reviewed for additional information. Thematic analysis technique was used for data analysis. Line numbers were used to identify questions asked by the interviewer and responses made by the participants. Themes were developed from the participants’ responses on different questions and various issues. Participants’ responses were categorised according to themes. Themes were colour-coded and those colours were used to shade any response relating to specific themes in the interviews. Content theme analysis was employed to maximise the chance that all relevant information was grouped and coded appropriately. The notes were cross-checked to ensure responses of participants were coded appropriately.

Three main themes emerged from the interviews: knowledge of diabetes and glycaemic control amongst participants, factors influencing the control of diabetes and perspective of participants on how to improve glycaemic control. The themes and sub-themes are presented in Figure 1.

All the participants understood the nature of the disease: incurable but manageable. The majority of the participants (n = 15/17) had at least one family member already diagnosed with diabetes. They confirmed that diabetes could affect family members:

‘My mother was living with diabetes and it affected her eyes. I was diagnosed of diabetes about three years ago.’ (Participant 05; F, 48 years)

There was a good level of awareness of diabetes complications amongst the participants:

‘I developed stinking wounds, filthy lump under my foot and spread to the leg, the doctor told me that I have few days to live before I die, if the leg is not amputated.’ (Participant 07; M, 66 years)

‘Not dating any woman because of this diabetes, my body is not responding anymore, I used to be strong but has lost my spark, I went to the pharmacy to buy boosters but they are not helping.’ (Participant 12; M, 50 years)

‘I have something that developed few weeks ago, my feet are feeling hot and painful, and when asleep I take them out of the blankets.’ (Participant 16; F, 72 years)

The majority of the participants (n = 13/17) had no knowledge of what is considered to be good glycaemic control or the desired treatment target for using diabetic medication. The minority (n = 4/17) who had some idea about the control of blood sugar reported that they were not sure if blood sugar levels should be less than 8 or 10:

‘My blood sugar fluctuates between 20, 17 and 18, only last month; I saw a change when it was 6.8. I am not sure what the level is supposed to be.’ (Participant 08; F, 45 years)

‘My sugar is not controlled because I faint regularly and wake up in the hospital then feel better. The doctor placed me on insulin injection. I think the sugar should be less than 10 if it is normal.’ (Participant 17; F, 54 years)

The majority of the participants (n = 14/17) get help and support from family members. The doctors and nurses also provide assistance to the diabetic patients:

‘I always get a good service at the hospital because I make sure that I get to the clinic first and I always meet the health care workers in good mood.’ (Participant 10; F, 68 years)

Only a few participants (n = 7/17) reported that they do not get the help they need from the doctors and nurses. They expressed their disappointment in the quality of care the doctors and nurses offered at the hospital; reference was made to the short consultation time, lack of listening during consultation, eagerness by doctors to write medication and the long queues:

‘The healthcare workers care less about the patients but I understand them because they care for 200 patients in a day.’ (Participant 11; F, 63 years)

‘People are not the same, other health care workers treat us well and others don’t. I never received any advice regarding the control of my diabetes.’ (Participant 02; F, 65 years)

All the participants remembered the type of medication they were using and some of them brought out their clinic cards for the interviewer to check the name of the medication. All of them were either on oral medication (metformin, glibenclamide or gliclazide) alone or a combination of oral medication and injections (insulin).

All the participants considered poverty as an important reason why blood sugar is not controlled. Some of the participants explained how lack of money was contributing to poor control of their blood sugar:

‘No money for taxi, hence, cannot keep clinic appointments and cannot go to clinic to fetch my pills.’ (Participants 06; F, 54 years and 08; F, 45 years)

‘I don’t eat breakfast and I cannot drink pills on an empty stomach, sometimes, no money to buy food at home.’ (Participant 02; F, 65 years)

Lack of money is linked to the dietary adjustment required for the control of their blood sugar, which seemed impossible because the majority of the diabetic patients were very poor. They had no money to buy a glucometer to monitor blood sugar at home.

Adherence to medication was explored: thirteen participants (n = 13/17) acknowledged that they miss some doses of their medication when they travel away from their home. Six participants reported poor adherence to treatment. Some of the reasons for non-adherence included: forgetfulness in taking medication, not collecting medication from the clinics, fear of taking medication on an empty stomach, being tired of using drugs every day, too many pills to take every day, side-effects of the medication and lack of information:

‘I do not take my medications when going away from home.’ (Participant 16; F, 72 years)

‘I do not think I should used the medication every single day though I sometimes feel weak when not taking them.’ (Participant 07; M, 66 years)

The relationship between diabetes and obesity was explored to gain an understanding of the control of blood sugar. Fifteen participants acknowledged that there is a definite relationship between diabetes and obesity. Some of the participants made reference to themselves as being obese and suggested that that could be the reason for their sugar not being controlled. Some of the participants however, disagreed with the idea of obesity as a probable cause for uncontrolled diabetes.

‘Diabetes does not want fatty food and now when one is obese, it's a sign that you eat more than normal and you also take fatty and unhealthy food so that can make it difficult for your diabetes to be controlled.’ (Participant 10; F, 68 years)

‘There is no relationship between obesity and control of diabetes at all, look at me how tiny and poor I am and it is difficult to control my diabetes.’ (Participant 02; F, 65 years)

Assessment of the quality of diabetes education at the clinics was explored; this generated mixed results. Eight participants were appreciative of the diabetic education provided by the doctors and nurses whilst some were disappointed that doctors were always in a hurry to prescribe medication for the patients. Some of the participants, who reported that health care workers do counsel them about control of their diabetes, felt that the advice was not practical. They were often told to eat healthy, avoid fatty meals, and eat fruit and vegetables, all of which require money to buy, and they are poor. But all of the participants were in agreement that alcohol and cigarette smoking were not good for diabetic patients:

‘No advice from the health care workers, sometimes, they are too much hurrying.’ (Participant 06; F, 54 years)

‘No advice from the health care workers regarding the control of my sugar, I only hear from other people outside who have experience in living with diabetes.’ (Participant 11; F, 63 years)

‘I once visited a private doctor who told me that the combination of the pills is not correct for me but the nurses at the clinic kept on giving the wrong pills.’ (participant 16; F, 72 years)

Fifteen of the participants (n = 15/17) reported that their nearest clinics usually do not have doctors; they are compelled to travel to Mthatha to see doctors, which requires money for transport fares. They usually get to the hospital by 06:00 to join the queue for doctors, who would arrive at the consulting rooms at 09:00. Four participants reported that they sometimes see doctors who do outreach programmes at their local clinics:

‘I am dependent on the doctor who visits from the hospital. Absence of doctors at the local clinics creates complications for me, I feel weak when I am exposed to the sun.’ (Participant 07; M, 66 years)

All the participants were certain about healthy eating: avoidance of fatty meals, eating small amounts of food at a time and eating fruit and vegetables. Ten participants understood that exercise is beneficial. Six of them would recommend exercise to other diabetic patients. Fourteen participants suggested that diabetic patients must keep their clinic appointments for check-ups. Thirteen participants emphasised that taking medication as directed by the health care workers is crucial for control of blood sugar.

Twelve participants were certain that if people could take their treatment and avoid starvation, their blood sugar would be controlled. Ten of the respondents recognised that diabetic patients need to heed the advice of the health care workers and other people who are living with diabetes. Nearly all the participants (n = 16/17) recommended that health centres need to be upgraded to provide quality diabetes care services.

Doctors were needed at each of the local clinics close to their communities; this would relieve the burden of traveling to town to attend hospitals. Dedicated nurses at the clinics should provide diabetes education:

‘No seminars or health educational classes are taking place at the clinics. Government only focuses on HIV/AIDS and other conditions like diabetes are ignored.’ (Participant 01, F, 56 years)

Eleven respondents were convinced that if more attention was diverted towards diabetes care at the various health facilities, patients would achieve better control. The participants reiterated that increased awareness and communication are crucial for improvement in the control of diabetes:

‘Government should try means exactly the way they do with HIV/AIDS. People with HIV/AIDS used to take many pills and now they are only taking one pill.’ (Participant 09; M, 51 years)

Ten participants were of the opinion that government needs to provide money and food supplements to diabetic patients:

‘The government can also try and have a way of identifying those people who are struggling financially and support them with food parcels because sometimes they default as a result of not having food in time so that they can take their medications.’ (Participant 04; M, 53 years)

Fifteen participants thought that by monitoring the blood sugar at home, they would achieve better control, hence suggesting that government should provide glucometers. Some participants also suggested that health facilities must keep a stock of medication for diabetes to prevent running out.