|Year : 2021 | Volume
| Issue : 4 | Page : 193-198
Exploration of barriers to self-care practices among diabetic patients attending chronic disease clinic in an urban slum
Anuradha Kunal Shah, Sandeep Akhilesh Mishra, Prabhadevi Ravichandran
Department of Community Medicine, Seth Gordhandas Sunderdas Medical College and King Edward Memorial Hospital, Mumbai, Maharashtra, India
|Date of Submission||18-Jul-2021|
|Date of Acceptance||20-Sep-2021|
|Date of Web Publication||31-Dec-2021|
Dr. Prabhadevi Ravichandran
Department of Community Medicine, Seth Gordhandas Sunderdas Medical College and King Edward Memorial Hospital, Parel, Mumbai - 400 012, Maharashtra
Source of Support: None, Conflict of Interest: None
Background: Glycemic control in diabetes can be achieved by adopting self-care practices. It also leads to reduction of complications and improvement in the quality of life. Identification of barriers to adopting these practices can help devise strategies to overcome them. This study was conducted to understand the self-care practices among diabetics and the barriers affecting those practices among diabetics in the urban slum area.
Materials and Methods: This qualitative study using Focus Group Discussions (FGDs) was conducted in a chronic disease Outpatient clinic in Mumbai, in November 2020. Four FGDs with 32 participants were conducted. Thematic analysis of the transcripts was done.
Results: Three major themes were identified – living with diabetes, practices to maintain glycemic control, and potential barriers. Barriers for self-care practices were - confusing advice provided by family and doctors, feeling rejected (stigmatized), lack of motivation for exercise, complications of diabetes, lack of family cooperation, lack of knowledge on foot care, physical constraints, nonavailability of medications, lack of social and financial support, suboptimal knowledge regarding diabetes, and misconceptions.
Conclusions: Motivating diabetic patients for regular physical activity by starting from simple indoor exercises to outdoor exercises are necessary. Counseling the family members on the complications of diabetes due to inappropriate dietary practices should be advocated. Improvement in doctor-patient communication and providing information on the foot care practices is the need of the hour.
Keywords: Diabetes mellitus, qualitative study, self-care practice
|How to cite this article:|
Shah AK, Mishra SA, Ravichandran P. Exploration of barriers to self-care practices among diabetic patients attending chronic disease clinic in an urban slum. Int J Non-Commun Dis 2021;6:193-8
|How to cite this URL:|
Shah AK, Mishra SA, Ravichandran P. Exploration of barriers to self-care practices among diabetic patients attending chronic disease clinic in an urban slum. Int J Non-Commun Dis [serial online] 2021 [cited 2022 Jan 29];6:193-8. Available from: https://www.ijncd.org/text.asp?2021/6/4/193/334616
| Introduction|| |
India is the second-largest country to house a greater number of diabetic people. The global prevalence of diabetes has increased from 4.7% in 1980 to 8.5% in 2014. This rise can be attributed to urbanization and lifestyle changes. Diabetes is related to many life-threatening complications such as coronary heart disease, stroke, diabetic foot, and chronic renal failure. It is more important to maintain target blood glucose levels to prevent these complications. Glycemic control can be achieved by adopting self-care practices. They are defined as an evolutionary process of development of knowledge or awareness by learning to survive with the complex nature of diabetes in a social context. Some of the important self-care behaviors are diet control, physical activity, regular blood glucose monitoring, drug compliance, and risk-reduction behaviors. All these practices are associated with good glycemic control, reduction of complications, and improvement in the quality of life.
Many studies have shown improvement in the quality of life of diabetic patients by following self-care practices. Studies done in India measured only self-care practices of diabetic patients, but the exploration of barriers to these practices has been on limited focus. Hence, we conducted this study to understand the self-care practices among diabetics and the barriers affecting those practices among diabetics in the urban slum area.
| Materials and Methods|| |
This qualitative study using Focus Group Discussions (FGDs) was conducted in a chronic disease Outpatient clinic attached to an Urban Health Training Centre (UHTC) of a medical college in Mumbai, Maharashtra, India, during November 2020. This health center caters to the urban slum population. The ethical approval was obtained from the institutional ethics committee (EC/OA-162/2019). Registered diabetic patients who were receiving treatment for more than 1 year from the study center were included. Diabetic patients who were very ill and cannot take care of themselves were excluded from the study. To achieve diversity in sampling, at least four FGDs were planned. One FGD was conducted with male participants, one with female participants, one with both male and female participants, and another one with poor glycemic control. As data were saturated after four FGDs, no further FGDs were conducted. Each FGD has 8 participants, hence, a total of 32 were included in the study.
Only the moderator (Au1), note-taker (Au3), and participants were present at the time of the interview and the room was closed for privacy. There was no interference by the concerned incharge in the selection and none of the participants refused to be a part of the discussion. Confidentiality and anonymity were assured and ground rules were discussed with each group. Consent for participation and audio recording of the FDG was taken. No incentive was provided other than refreshments. Each FGD lasted for a period of about 45 min. FGDs were conducted by the moderator. The transcript was prepared depending on the notes of FGD, audiotapes, and memos. Thematic analysis of the transcripts was done. Data were coded using the Microsoft word comment feature. A predominant deductive approach was used to code the FGD transcripts. Both de novo and in vivo types of codes were used. Relationships between codes were identified. Themes and categories were drawn from it.
| Results|| |
A total of 32 diabetic patients participated in the FGDs. The sociodemographic characteristics of participants are given in [Table 1]. Thematic analysis of the transcripts led to the development of three major themes.
Theme 1-living with diabetes mellitus
People living with diabetes suffer from physical and emotional changes that allow the health-care professionals to have a more comprehensive understanding of the phenomenon. This theme highlights the life experiences of the patients living with diabetes. Major categories under this theme are explained below:
Participants openly identified themselves as having diabetes to their family members. No one felt shame or embarrassment. Although they have a positive attitude toward the disease, all the restrictions and advice given by doctors and family members along with symptoms had made life quite confusing for them.
“Everyone in my house knows about my condition, no one told anything about it. Nowadays diabetes is a common disease, earlier 1 in 100 got the disease, nowadays 98 in 100 are getting diabetes…………….” (Participant ID [PID] 4-FGD 2).
“Because of Diabetes I get body ache, sometimes I feel giddy too, everyone advises me to eat this eat that, I get still more tired of this. I don't know what I should do and what I shouldn't ……………….” (PID 5-FGD 4).
These factors play an important role in the self-management and coping skills required to delay the complications in diabetics. In our study, participants perceived that they are being rejected and they are causing a burden to their family members. We found that the patients had a low level of motivation to do regular physical exercise. Those who do regularly also are struck by boredom or mental discomfort.
“No one in my family asks whether I had taken tablet or not, they don't remember all these. It's our problem, we will suffer if we don't eat tablet……………” (PID 5 -FGD 2).
“I go walking daily evening after regular working hours, I feel it is boring nowadays………….” (PID 3 -FGD 1).
“My illness has become routine for them. They are tired of taking care of me……………” (PID 1 -FGD 3).
The morbidity and many related complaints due to diabetes were high in our study, which negatively impacts the self-care practices among our participants. Most of them told that they suffer from joint pain, body ache, breathlessness, hypotension, vomiting, giddiness, palpitations, tingling, and numbness. Few of them told that they have eye and kidney-related problems.
“Because of diabetes I fainted once and was admitted to a hospital 5 years back and once I got well, I started exercising…………….” (PID 7 -FGD 1).
“I have eye and kidney problems. I have joint problems too. Hence, I can't walk fast. Whenever I try to walk fast, I get numbness and pain, so I wait and relax for some time and resume walking again…………….” (PID 5 -FGD 1).
Theme 2-practices to maintain glycemic control and potential barriers
During the FGD, the participants shared the enablers and barriers of various self-care methods practiced by them. They discussed in detail diet, foot care, physical activity, blood sugar monitoring, medications, and the barriers which prevent them from adopting these practices. Two major categories have been drawn from these discussions: nonpharmacological factors and pharmacological factors [Table 2].
|Table 2: Categories and description under Theme 2.practices to maintain glycemic control and potential barriers |
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Theme 3-Other potential barriers
This theme highlights other potential barriers to self-care practices. Three major categories could be drawn from these discussions which are discussed in detail below.
Most of the patients said that they lacked moral support from their family members. They experience worry and anxiety because they received no meaningful support for diabetic care from their family side. The families considered it a burden to cook food based on diabetic restrictions as it was considered inferior in taste. However, there was no “dietary cheating” possible in one of the patient's homes as his sister is a nurse and supported him very well in controlling diabetes.
“Telling our family members to cook diabetic diet for me is waste, there are not many good people at my home…………….” (PID 2 -FGD 2).
“Doctor told me to eat less since I don't have a family to prepare food, I eat whatever I get outside…………….” (PID 2 -FGD 1).
“Ladies don't give much importance to food; whatever they make I eat…………….” (PID 5 -FGD 3).
“My sister is a nurse in our home, she tells me everything very strictly, whenever I want to eat chocolate, people in the house don't allow…………….” (PID 3 -FGD 1).
Monetary support is needed to purchase appropriate foods, vegetables, fruits and to prepare separate dishes for diabetic patients. Female patients might be lacking financial support which was found by the fact that they were constantly complaining about lack of medicines in government set up which in turn tells us they are reluctant to pay and get medicines from the pharmacy.
“Two food preparation in one house, can't happen, so whatever they prepare I eat it…………….” (PID 5 -FGD 2).
Knowledge and misconceptions
The knowledge regarding various dietary choices, dietary restrictions, and symptoms of diabetes was good in our study participants. However, patient and provider communication need to be improved to clear various doubts raised by the patients. Diabetes education class which provides knowledge on what to eat and what portion size to eat has to be provided in detail. Suboptimal knowledge and beliefs on the cause of diabetes, blood sugar testing, and medications might interfere with self-care management in patients. These beliefs are modifiable by educational interventions and counseling sessions.
“Fruits like Chickoo, Sitaphel, Mango are dangerous to eat in diabetes. I eat bitter gourd more than three kgs but I eat only one slice of mango. I eat Dhal and chapati but I don't eat much rice and potato. Can I eat peas? Can I eat apples?…………….” (PID 2 -FGD 1).
“I know what not to eat but I don't know what to eat?…………….” (PID 1 -FGD 4).
“With increasing age tiredness and tension also increases, so we get diabetes…………” (PID 5 -FGD 2).
“Everything has chemicals nowadays; We don't get fresh fruits and vegetables so even young people are getting diabetes…………….” (PID 5 -FGD 2).
“Can I eat ayurvedic tablets? Can I eat tablets shown in television advertisements? My neighbor is taking those medicines. I think it may work for me…………….” (PID 4 -FGD 1).
| Discussion|| |
FGDs conducted among diabetic patients registered with UHTC of a medical college hospital in Mumbai revealed barriers for their self-care practices such as confusing advice provided by family and doctors, feeling rejected (stigmatized), lack of motivation for exercise, complications of diabetes, lack of family cooperation, lack of knowledge on foot care, physical constraints, nonavailability of medications, lack of social and financial support, suboptimal knowledge regarding diabetes, and misconceptions. Similar findings have been reported by several studies.
A qualitative study by Rani and Shriraam in South India reported that, culturally inappropriate dietary advice, lack of family support, health issues while exercising, lack of time to exercise, no information on foot care, target blood glucose levels, and complications were main barriers in practicing self-care among their participants. We have also come across some similar findings in our study; however, some findings suggest differently. The dietary advice given to our study participants was culturally appropriate and based on food items consumed in the majority of the households. Furthermore, in our study, most of the patients had ample time to do exercise but were either bored or other health effects prevented them from doing it. Another mixed-method study done on elderly women by Schoenberg and Drungle revealed that lack of monetary resources led to the inability to check blood glucose levels and purchase appropriate foods. Lack of access to quality health care and pain with disability were also some of the barriers that prevent self-care practices among older women. The findings were consistent with our study findings except for one aspect. Access to quality health-care services was good in our study. Our outpatient department runs 2 days a week, patients have access to quality health care workers, and blood sugar testing is recommended once in 3 months which is done at a subsidized cost. However, unavailability/shortage of medicines in the facility and lack of money may cause hindrance in the continuity of medications as reported by some participants. A cross-sectional study conducted by Selvaraj et al., in Puducherry, India, reported that 95.6% of patients had high adherence to medications, 78.8% had their blood sugar level checked once in 3 months, 63%–67% had regular intake of vegetables and decreasing the serving size of each meal. Only 50.6% followed the advice of at least 20 min of leisure-time physical activity. Very few patients (35%–57%) followed foot care practices. Except for washing of feet, other foot care practices were not followed. The study findings are consistent with ours where only one to two participants followed foot care and others did not have any knowledge about it. This lack of knowledge among patients on foot care practices can be attributed to limited health education and counseling done by health-care personnel on foot care. A qualitative study done by Mathew et al. in Canada revealed that men and women both received practical and moral support from their family members. This is in contrast to our findings where there was very poor family support in terms of food preparation and drug adherence for the participants. Extra resources and time are needed to prepare separate food for diabetic patients which were lacking among our participants' families. Culturally, in India, the food is rich in flavors and spices, therefore, dietary restrictions in diabetes can lead to a feeling of eating food inferior in taste. A multinational investigation which was carried out by Adul et al., among 217 diabetic patients in Europe, Australia, Asia, and America found unrealistic demands and financial burden as the main barrier to practice self-care. Participants found unrealistic expectations and advice about self-care provided by family and friends to be irritating. This is consistent with our study findings where our participants found all this advice was confusing. A community-based cross-sectional study conducted by Dinesh et al. in Karnataka found certain misconceptions about diabetes. About 56.5% of participants felt that diabetes can be controlled once blood sugar is normal and drugs are stopped. About 28.25% of respondents felt that diabetes can be cured by eating all bitter substances. They also found important practices related to foot care like checking the feet daily and inspecting the inside of shoes/footwear daily were lacking among the participants. This is consistent with our study findings where few participants emphasized eating large quantities of bitter gourd, others thought diabetes is due to chemical substances in food. The only way by which these beliefs and lack of knowledge on foot care can be corrected is by appropriate health education and counseling during follow-up visits. In another qualitative study by Mikhael et al., in Iraq, they found that suffering from physical pain due to a disc prolapse, osteoarthritis, or neuropathy is one of the barriers to physical activity among diabetic patients. This is also consistent with our study findings where physical constraints such as body ache, knee joint pain, and complications interfere with the ability to perform physical activity among our participants. A study done by Acharya et al., in New Delhi, India, found good adherence to medications among their patients. Whenever there was nonavailability of medicines in the government hospital, patients bought them outside as most of them belonged to the middle class and upper-middle class. In our study, we observed a gender bias concerning this factor, where the male participants bought medicines from a private pharmacy when the medicines were out of stock, however, few female participants did not. Although drug adherence is good even in our study, prolonged unavailability/shortage of drugs may lead to poor adherence in the future. This matter should be looked into.
| Conclusion|| |
Thus, the most important barriers which we identified in our study and which need to be addressed in the future are physical constraints, lack of family support, lack of information on foot care. Motivating the patients to do regular physical activity by starting from simple indoor exercises to outdoor exercises is necessary. Counseling the family members on the complications of diabetes due to inappropriate dietary practices should be advocated. Improvement in doctor-patient communication and providing information on the foot care practices is the need of the hour.
Ethical approval statement
Ethical approval was obtained from the Institutional Ethics Committee (EC/OA-162/2019) on 13th August 2020.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]