Diabetic patients’ perspectives on the challenges of glycaemic control

Introduction The factors affecting the control of diabetes are complex and varied. However, little is documented in the literature on the overall knowledge of diabetic patients about glycaemic control. This study explored the patients’ perspectives on the challenges of glycaemic control. Methods In this qualitative study, semi-structured interviews were conducted with seventeen purposively selected diabetic patients with HBA1c ≥ 9% at Mthatha General Hospital, South Africa. The interviews were conducted in the isiXhosa language and were audiotaped. Two experienced qualitative researchers independently transcribed and translated the interviews. Thematic content analysis was conducted. Results Three main themes emerged: overall knowledge of diabetes and treatment targets, factors affecting the control of diabetes and how glycaemic control could be improved. The majority of the participants demonstrated poor knowledge of treatment targets for diabetes. The majority of the participants reported that lack of money affected their control of diabetes. Some of the participants reported that the nearest clinics do not have doctors; hence, they are compelled to travel long distances to see doctors. Conclusion Poverty, lack of knowledge and access to doctors affect the control of diabetes in the rural communities of Mthatha, South Africa. The government should address recruitment and retention of doctors in primary health care.


Introduction
Diabetes mellitus is a chronic non-communicable disease that affects about 2 million people in South Africa. 1  Africans died from diabetic-related complications in 2012. 2 The increase in the prevalence of diabetes mellitus (predominantly type 2) in the population is the cause of the rise in complications: non-traumatic amputation, cardiovascular diseases, blindness, end-stage renal failure, and many others. 3,4,5,6,7 Poor glycaemic control amongst patients with diabetes mellitus constitutes a major public health problem. 8 The progression of diabetes complications occurs due to poor glycaemic control, which can be managed by quality healthcare services. 9 Diabetic patients should be empowered with knowledge to manage themselves. 10,11 Basic knowledge of diabetes is considered a prerequisite for self-care management. 11 Diabetes self-care management has been linked with diabetes education and knowledge acquisition. 10,12 Self-care management is associated with a reduction of complications and improvement in the quality of life of diabetic patients. 13 The depth of diabetic information that would lead to better glycaemic control is not documented in the literature. However, patients should know about the nature of diabetes, complications, medication and side-effects, role of dietary adjustment, exercises, self-monitoring of blood sugar, treatment targets and many others. This should start at the time of diagnosis and be updated at regular intervals. The benefits of maintaining normal body mass index must be explained. Patients need to understand the deleterious association of cigarette smoking and cardiovascular risks. Patients should be taught how to take care of their feet, inject insulin, recognise complications and skills required to cope with living with diabetes. 5 Diabetes education should be evidence-based and structured according to the socio-demographic characteristics of each patient. 10 According to Kumar and Clark, if health care workers fail to provide appropriate information, then friends and family members give patients all sorts of inaccurate information. 5 Diabetic educators are crucial to the successful implementation of diabetic education programmes. 8 However, very few public health care facilities in South Africa can boast of diabetic educators; 10 therefore, time to educate patients is limited given the vast numbers of patients and shortage of health personnel.
The importance of the knowledge of diabetes to glycaemic control has been evaluated in a number of studies. 14,15,16,17,18 There have been mixed reports in the literature: whilst some studies reported that an improvement of knowledge of diabetes might predict good glycaemic control, 8,19 others demonstrated no significant association with glycaemic control. 11,16,20 Earlier studies suggested that patients with chronic diseases (T2DM inclusive) who are active participants in their health care have better health outcomes. 14, 15 Heisler et al. highlighted the American Diabetes Association's position to launch a campaign to urge diabetic patients to be aware of their treatment target and actual values of HBA1c, blood pressure and cholesterol levels (their ABCs). 16 A number of studies have examined the relationship between knowledge of treatment target and glycaemic control. 16,17,18 The majority of the participants in these studies had no knowledge of their recent HBA1c.
Heisler et al. concluded that knowledge of HBA1c alone was not sufficient to translate increased understanding of diabetes care into improvement in self-management of diabetes. 16 Santos et al. reported that glycaemic control did not correlate with knowledge of diabetes amongst the participants in their study. 11 They suggested that theoretical or practical understanding of diabetes is not by itself significantly associated with appropriate glycaemic control.
Iqbal et al. examined the impact of improving the knowledge of diabetic patients on glycaemic control. 19 The baseline measurement of the knowledge of the participants showed that the majority were not familiar with HBA1c. Knowledge of glycaemic control was generally poor amongst the participants. Intervention with diabetic education yielded improvement in glycaemic control amongst poorly controlled T2DM, who were in the unfamiliar group (10.7% versus 9.5%, p = 0.04). Knowledgeable diabetic patients tend to have a good attitude, which is linked to improvement in glycaemic control. 8 A few studies found no significant association between the level of knowledge of diabetes and glycaemic control. 11,20 Notwithstanding, there is overwhelming evidence that diabetes education is central to self-care management and ultimately, improvement in glycaemic control. 5 Many studies examined the association and magnitude of the relationships between health literacy and diabetes outcomes. However, qualitative exploration of the depth of knowledge of patients about glycaemic control appears to be neglected in the literature. Such information might influence the structure of patient education by clinicians. The feedback from patients provides valuable inputs into quality improvement of health care services, policy formulation and guideline development.

Operational definitions
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.

Aim
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.

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

Study design
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.

Period of study
The study was conducted in October and November 2013.

Research methods and design
Sampling and procedure of the study 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 indepth 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.

Results
Characteristics of Participants (

Themes
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.

Theme 1: Knowledge of diabetes and glycaemic control amongst participants
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:    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: ' 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).

Theme 2: Factors influencing the control of diabetes
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: 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: 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.' ( 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: 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)

Theme 3: Perspective of participants on how to improve glycaemic control
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: 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.

Discussion
There have been mixed reports 8,14,15,16,17,18,20 from previous research studies: whilst some reports showed that improvement of knowledge of diabetes care might predict good glycaemic control, 8,14,15 others did not link with improvements. 11,16,20 Our study reported that the majority of the respondents (n = 15/17) had some knowledge of diabetes and its complications despite their critically poor glycaemic control. Most of the participants (n = 14/17) understood what is necessary for good glycaemic control but had little idea about the treatment target for such control. This is an aspect of the diabetes care that clinicians could improve during consultations.
Diabetic patients should have basic knowledge of the treatment goal and what is necessary to achieve this. Basic knowledge of diabetes is considered a prerequisite for self-care management. 11 Every diabetic patient should, at a minimum, know about the disease condition, complications, treatment options and dietary adjustment. This concept is supported by earlier studies, which suggested that patients with chronic diseases who are engaged and are active participants in their health care have better health outcomes. 14,15 The finding of poor glycaemic control amongst the participants, despite their good awareness of diabetes and its complications, suggests gaps in translating knowledge to actions. Santos et al. 11 reported that glycaemic control does not correlate with knowledge of diabetes. They suggested that theoretical understanding of diabetes is not by itself significantly associated with appropriate glycaemic control. Also, Heisler et al. 16 concluded that the knowledge of HBA1c alone was not sufficient to translate increased understanding of diabetes care into improvement in self-management of diabetes.
Thirteen participants in the study demonstrated poor knowledge of the treatment target for their diabetes. The study by Iqbal et al. 19 found that the majority (59.5%) were unfamiliar with HBA1c. Knowledge of glycaemic control was generally poor amongst the participants, especially T2DM patients. Intervention with diabetic education, however, yielded improvement in glycaemic control amongst the poorly controlled T2DM, who were in the unfamiliar group. Whether diabetes education would lead to improvement in glycaemic control in this study population requires another research study.
The glycosylated haemoglobin of 9.4% -13.6% in this study may suggest a poor relationship between diabetes knowledge and glycaemic control. A number of studies have found no significant association between the level of knowledge of diabetes and glycaemic control. 11,20 However, the evidence for the benefits of patient education on diabetes is overwhelming. 8,10,12,14,15,21 Hence, national and international bodies continue to emphasise in their recommendations that diabetic education should be provided at all levels of care. 10,21 Diabetes education of patients should address adherence issues and the other factors of glycaemic control in each patient. Successes from adherence counselling provided to HIV positive individuals 25,26 might lead to improvement in the key performance indicators of diabetes care. As reported by some of the participants, reasons for poor adherence are many and varied; therefore, adherence counselling of diabetic patients may produce similar results as seen in HIV care. The participants highlighted a number of barriers to achieving good glycaemic control: poverty and its impact on the dietary requirements of diabetes, poor treatment adherence, lack of knowledge of treatment targets and lack of doctors at the primary health care centres in the rural areas. These are in keeping with the determinants of glycaemic control documented in the literature. 27,28,29.30,31,32 The challenges faced by the study population reflect the level of unemployment, rural dwelling and lack of knowledge of glycaemic control in South Africa. The demand for food parcels and financial support by participants in the study reflects the current economic situation in most rural communities. Patients need money to take taxis, buy food and provide the basic needs of life.

Limitations
This study is limited by the fact that qualitative study findings cannot be generalised. The selection of more than one health facility for the study might shed more light on the issues of poor glycaemic control in different areas in the country. Future studies should explore the perspectives of health care workers and health managers on glycaemic control.

Conclusion
The understanding of the patients' perspectives on the challenges of poor glycaemic control is relevant. Useful data on the overall knowledge of diabetic patients were obtained, as well as the barriers to achieving good glycaemic control. Participants in the study highlighted some of the shortcomings of consultations with clinicians: not spending quality time with patients and not paying proper attention to the particularities of each patient. Availability of doctors in the rural health facilities remains a challenge to equitable health service delivery in South Africa. The re-engineering of primary health care in the country should prioritise health service delivery to the rural communities. The participants in the study provided insight into the probability of an association between poverty and poor glycaemic control.
However, the qualitative nature of the study does not allow for such a conclusion to be drawn, hence a prospective study is proposed to test this hypothesis.