Obstacles for self-management practices among diabetes patients: A facility-based study from Coastal South India.

Introduction

Diabetes mellitus (DM) is a complex, chronic metabolic illness characterized by continuously elevated blood glucose levels which if not controlled leads to complications related to the eyes, nerves, kidneys, and cardiovascular system, ultimately resulting in death.¹ The World Health Organisation (WHO) has estimated that diabetes and kidney disease was responsible for over 1.6 million deaths in 2022, with 47% of the deaths occurring before 70 years of age.² The rise in prevalence of diabetes is predominantly reported in low- and middle-income countries, where deaths due to DM has increased by 13% over the past 20 years.^1,3,4

India accounts for around 17% of the total diabetes population and is often referred to as the ‘Diabetes capital of the world’.⁵ India ranks among the top three countries with the highest population of people living with diabetes, along with China, and the USA.⁶ The National Noncommunicable Disease Monitoring Survey (NNMS) carried out among adults aged between 18-69 years reported a 9.3% and 24.5% prevalence of DM and impaired fasting blood glucose (IFG) respectively.⁷ A multi-centric study conducted in 2017 reported that 47% of DM cases remain undiagnosed in India, emphasizing the fact that awareness regarding the disease remains poor in the population.⁸ These undiagnosed cases of DM will end up with complications and burden the health system at various levels of care. Diabetes also leads to significant financial implications, with the global economic burden estimated around US $1.31 trillion.⁹ Effective control and management of diabetes can prevent or delay the progression of the complications and can reduce the morbidity, mortality and the costs associated with this condition.¹⁰

Treatment of diabetes is multifactorial, with availability of multiple interventions which work synergistically to control hyperglycemia. Weight loss and intensive lifestyle and behavioural modifications are the initial modalities of treatment, along with pharmacologic methods which includes use of drugs of various categories, like metformin, sulfonylureas, glinides, DPP-4 Inhibitors, and SGLT-2 inhibitors.¹¹ In addition to the various modalities of treatment available, self-management or self-care plays a pivotal role in the management of DM and prevention of its complications.

The WHO defines self-care as “the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a healthcare provider”.¹² Self-care in diabetes include regular monitoring of blood glucose levels, regular physical activity, healthy eating, foot care, and compliance to medication.¹³ Relationship with medical professionals, support from friends and family, knowledge of the disease, and uncertainty about consultation are some of the other factors that can also influence diabetes self-care.¹⁰

Self-monitoring of blood glucose levels provides a quick and easy way for the patient to identify periods of hyperglycemia. Based on the blood glucose levels, the healthcare provider can adjust or modify the treatment, while the patient can keep track of his blood glucose level.^14,15

Diet control is one of the most significant factor that can be used to determine the level of self-care achieved.¹³ Weight loss is the cornerstone of the dietary recommendations by the American Diabetes Association, which recommends a lowered caloric intake to successfully induce weight loss and reduce obesity.¹⁶ Physical activity and exercise also improves the overall physical and psychological health of the patient, and acts as an adjunct to the weight loss regimen.¹⁷

Foot care includes a variety of interventions such as foot temperature measurement, use of therapeutic footwear, patient education, inspection and assessment by professionals.¹⁸ Proper foot care practices can lead to reduced development of complications like ulcers and amputations.¹⁹ However, a shortage of trained podiatrist staff in India, and lack of foot care knowledge among the patients has resulted in a rise in the incidence of diabetes-related foot complications.²⁰ Adherence to the treatment is also critical component of self-care as missed doses of the prescribed drugs can lead to elevated glucose levels and development of the complications.²¹

Improved self-care behaviour adherence has been linked to increased patient involvement in treatment decisions and satisfaction with provider communication.²² Patient’s knowledge about the disease, his attitude, and perception towards lifestyle modifications and various other aspects of diabetes self-care including treatment adherence and advice is considered to be important drivers for the prevention and control of diabetes.¹³ Clinicians may further influence the patient’s knowledge and attitude towards self-care by using effective communication techniques, at the same time being supported by a well-integrated healthcare system.²³

It is important to consider perspectives of both the patient and the health care provider when exploring the barriers for diabetes self-care practices. Several factors influence a patient’s ability to follow diabetes self-care practices on a day-to-day basis. Studies have reported obstacles arising from poor communication between the medical practitioner and the patient, and also due to the unavailability of diagnostic facilities and short supply of drugs.²⁴ Another important factor that results in poor management of DM is the inadequate knowledge about the disease or its management, either due to ignorance or scarcity of trustworthy sources that provide information regarding the disease.²³ In developing counties, financial difficulties majorly affect self-care and monitoring. Poor moral support from the family members or the lack of desire to impact a change on patients’ lifestyle also affects their self-care.^22,23 To prevent the spread of COVID-19, countries resorted to frequent lockdown. This in turn, resulted in decreased access to outpatient care for regular check-ups. Isolation and stress also resulted in mental health issues, and this in turn also acted as barrier to self-management of DM.²⁵ The long-term management of diabetes requires a huge self-motivation on the part of the patient, and sustained support from loved ones. The overwhelming demand for DM self-care can negatively impact daily life, causing “Diabetes-related Distress” which can reduces self-care motivation, leading to decreased physical and psychological well-being, potentially increasing the chances of complications and mortality. This psychological component and its impact on DM self-care is often neglected in rural India, where the resources for healthcare are limited.²⁶ Effective self-management has extended psychological benefits, with decreased anxiety and depression reported among adherent patients.²⁷

Self-management thus plays a crucial part in the control of diabetes. It is crucial to identify the barriers or obstacles that may impede self-care practices among the people living with diabetes. Understanding and identifying these barriers at the early stage of treatment is very important to achieve optimal blood glucose control and prevent complications in the future.

This facility based cross-sectional study was carried out to identify the obstacles to self-care practice, and the factors associated with the obstacles among the type 2 DM patients admitted to a tertiary care centre in Mangalore.

Methods

Results

A total of 107 type 2 DM patients were included in the study. Majority (64.5%, n = 69) of the participants were aged above 55 years, with the mean age of 60.3 (±10.9) years. A higher proportion (72%, n = 77) of the participants were males and belonged to lower socio-economic status (65.4%, n = 70). Family history of DM was present in 41% (n=44) of the participants.

The median duration of DM among the participant was 10 (4–7) years. About 58% (n = 62) of the participants had at least one comorbidity, with hypertension being the most common (82.2%, n = 51). The general information of the study participants is given in Table 1. The full dataset can be found under Underlying data.⁴⁶

The obstacles for diabetes self-care as assessed using DOQ-30 is depicted in Table 2. The mean response score for most of the items under various domains was less than 3.

However, in one item each from the domains of Support from Friends and Family, and Knowledge of the disease, the participants scored more than the average cut-off of 3, suggesting an obstacle.

The mean response score for item, ‘I would manage my diabetes much better if I had encouragement socially’ (item one) under the domain, Support from Friends and Family, was 3.73 (0.12 SEM) with 79 (73.8%) participants agreeing that social support is important for diabetes control. The mean of response to the item, ‘I have difficulty understanding information from literature’ (item two) under the domain, Knowledge of the Disease was 3.58 (0.09 SEM) with 66 (61.7%) participants agreeing that they were unable to understand the information related to diabetes from the literature.

Multinomial logistic regression (MLR) was applied on the two items identified to be obstacles for self-care to find out the significant factors associated with them.

About 74% (n = 79) of participants stated that item one was an obstacle for self-care practice, while 7.47% (n = 8) of them were neutral about their response to this statement. MLR analysis with neutral as the reference category revealed no predictive factors for this obstacle.

Item two was an obstacle for 61.68% (n = 66) of the participants, while 23.3% (n = 25) were neutral about their response. MLR analysis revealed socioeconomic status is a strong predictor of this obstacle with p value of 0.002 (odds ratio: 3.65 and confidence interval: 1.60-8.33). The other factors were statistically insignificant. This data is presented in Table 3.

Discussion

In this facility based cross-sectional study, 107 type 2 diabetes patients were assessed about the obstacles for self-care practices using the Diabetes Obstacles Questionnaire-30 (DOQ-30).¹⁰

Among the 30 items across 9 domains of self-care, only 2 items were considered as obstacles by the participants in our study. The lack of social encouragement for better management of disease and difficulty in understanding the literature about the disease were agreed upon by the participants to be a barrier for practicing self-care.

Lack of social support as a barrier for diabetes self-management was reported by a multi-national study, where effective social support system with constant motivation and encouragement from friends and family members were identified as enablers for self-management.³¹ The importance of social support in diabetes has been documented in multiple studies from India and abroad, which have reported that a strong social support leads to a better degree of self-management and overall positive outcomes in diabetes patients.^32,33 A systematic review and meta-analysis conducted by Youngshin et al.³⁴ found social support to be significantly associated with self–management, with the strongest effect on regular glucose monitoring. On the contrary, lack of support and isolation, for example a patient living alone, is associated with poor self-management, including a reluctance to use insulin, medicines, and irregular testing of blood glucose levels. They are also more likely to not follow any diet plan to avoid the stigma and embarrassment associated with diabetes.³⁵ A study conducted in Punjab, India, identified the lack of family support as a significant factor contributing to non-compliance with diabetes self-care practices. Participants cited non-preparation of appropriate diabetic meals, and delayed medication reminders as contributing factors to their non-compliance.³⁶ The lack of support from family and friends can directly lead to poorer psychological wellbeing, improper or less than adequate self-management, and ultimately lead to suboptimal glycaemic control and poor outcomes for the patient.³⁷

Difficulty in understanding diabetes related literature was also identified as an obstacle in our study. The role of education in diabetes self-care is well documented with various studies reporting a correlation between lower educational status of the patient and poor self-management practices. Low educational status leads to reduced health literacy, which can adversely affect individuals’ ability to manage chronic conditions like diabetes.³⁸ Poor level of knowledge among patients with chronic diseases, especially diabetes is well documented, with low level of health literacy being reported between 15 to 40% of the population.³⁹ Various studies from USA and Japan have documented that low health literacy was associated with poor diabetes knowledge, which can in turn affect the practice of diabetes self-care.^40–42 Poor diabetes related knowledge was also identified to be an important obstacle for diabetes self-care practice in a study from India by Gupta et al.³⁶ Participants in the study believed they lacked knowledge of foot care, blood sugar control, and methods to reduce diabetes care stress. They cited the lack of knowledge and awareness about appropriate physical activities as the cause of inadequate physical activity.³⁶ A study by Aziz, et al.,¹⁹ reported a correlation between education of the patient and foot care practices, along with a decreased rate of amputations associated with diabetes. A similar study conducted by Chai et al.⁴³ showed a significantly increased psychological health and decreased glucose levels after six months following self-management education. An integrative review by Olesen et al.⁴⁴ found a patient centred approach to diabetes self-management education to have a noticeable impact in improving the self-management, leading to better haemoglobin A1c levels, as well as the quality of life of the patients.

Several studies have reported an adequate control of blood glucose levels and improvement in morbidity and mortality if the patients follow self-management behaviors such as blood glucose monitoring, nutrition, exercise, medication, and foot care.^19,43–48 Diabetes education is thus very important and should be an integral part of every diabetes control program.

Social support and education have been identified to work synergistically to bring about improvement in clinical outcomes in a diabetes patient.¹²

The other objective of our study was to identify the factors that may be predictive of the obstacles for the self-care management among diabetes patients. We considered two statements from DOQ-30: ‘I would manage my diabetes much better if I had encouragement socially’ and ‘I have difficulty understanding information from literature’, which were reported to be the obstacles faced by the study participants and we tried to predict the factors for these obstacles. MLR analysis revealed socioeconomic status (OR – 3.65, CI – 1.60-8.33 and p – 0.002) to be significantly associated with participants not being able to understand the diabetes related literature. No factors were found to be significantly associated with lack of social support for diabetes management among the participants.

Socio-economic status is a multidimensional factor, which is a combination of education, income, and occupational status. It is linked with Social Determinants of Health (SDOH) which includes accessibility to quality health care, good nutrition, transportation, housing, and social engagement, all of which can affect disease management. Low SES indicates a lower level of education. In our study, SES was found to be a predictive factor for patients not being able to understand information regarding diabetes from literature. All levels of SES have been consistently reported to be a strong predictor for disease onset and progression for many chronic diseases, including diabetes.⁴⁹ Financial constraints, including the inability to purchase necessary medications not readily available in the public health system, and the cost of testing in private laboratories due to the absence of blood sugar testing facilities, particularly in rural areas, have been identified as significant obstacles in a qualitative study conducted in Punjab, India.³⁶ Poor SES has been reported to be a major predictor of poor medication adherence among surveys in Indian diabetic populations.^38,50 Patients belonging to lower SES are more likely to develop diabetes, poor self-care management, experience complication, than those belonging to higher SES.^51,52

Although age was not identified as a significant factor in our study, it can significantly influence diabetes self-care practices. Diabetes self-care is a complex process which involves dietary modifications, regular exercising, regular blood glucose monitoring and compliance to treatment, all of which work synergistically to achieve an optimum blood glucose level. Older diabetes patients have a unique set of problems which make practicing diabetes self-care challenging. Decreased physical and cognitive abilities, presence of comorbidities, and complications, polypharmacy, absence of support system, change in dietary habits, and depression associated with chronic diseases hamper the diabetes self-care behaviour in geriatric patients.^48,53,54 In contrast, younger adults, due to their demanding and active lifestyles, may encounter challenges in maintaining a rigid diet and exercise regimen. Peer pressure can also lead to the adoption of unhealthy eating habits.⁵⁵

In a country like India, several social and cultural factors significantly influence diabetes self-care practices. Young unmarried women with diabetes often face diabetes-related stigma, which may affect their marriage prospects. This may prompt them to hide their condition and not follow any self-care practice.^50,53 Women with diabetes may also compromise their dietary needs for familial preferences. Factors such as unsafe neighborhoods and a lack of recreational facilities, can also prevent compliance with exercise regimens.⁵⁰ Walking or exercising in public may not be culturally acceptable for some women, and work commitments leave little time for physical activity.^50,56 Many prefer traditional healers or local remedies for diabetes management due to high costs. Rural areas lack diabetes specialists, leading to improper or delayed treatment.³⁶ People with diabetes may hide their condition due to fear of judgment or weakness. In rural areas, some believe diabetes is a result of past sins or fate, leading to reluctance or delay in seeking proper care.⁵⁷ Lack of dietary disinhibition, a traditional carbohydrate-rich Indian diet, and frequent social gatherings, especially in rural areas, pose significant challenges to diabetes self-care in India.^58,59 Addressing these cultural and social factors is crucial for effective diabetes care, especially in a diverse country like India.

The obstacles of diabetes self-care faced by the participants in our study were mainly due to their poor education and lower economic status. Based on the results of the DOQ-30, the majority of the patients did not have any problem following a diet or an exercise pattern as they felt that these lifestyle modifications were necessary to lead a longer and better life. The healthy relationship between the participants and healthcare providers likely ensured better information exchange to manage their diabetes in an efficient manner.

Conclusions and recommendations

In our study, the two major obstacles for self-management practices that were identified were in the domains of Support from Friends and Family, and Knowledge of the Disease. Socioeconomic status was identified to be a predictive factor associated with the participants who are not able to understand information from the literature. Self-management is an integral component of the treatment plan of diabetes and can lead to more positive outcomes. Targeting these barriers as identified in our study could improve self-management. Having a strong social support network could be advised and encouraged. An increased focus on patient education and awareness both in primary care as well as awareness programs could lead to decreased rate of complications, and an increased quality of life for patients moving forward. A culturally sensitive and community-based approach is paramount for enhancing diabetes care in India. By comprehending and addressing social and cultural determinants, healthcare professionals can devise more effective, enduring, and patient-centered diabetes management strategies.