|Year : 2020 | Volume
| Issue : 4 | Page : 171-177
Situational analysis of practice patterns and challenges in cardiovascular disease management: A qualitative study
Farah Naaz Fathima1, Twinkle Agrawal1, Padmini Nidhin2, Denis Xavier3
1 Department of Community Health, St. John's Medical College, Division of Clinical Research and Training, Bengaluru, Karnataka, India
2 Department of Pharmacology, St. John's Medical College, Division of Clinical Research and Training, Bengaluru, Karnataka, India
3 St. John's Research Institute, Bengaluru, Karnataka, India
|Date of Submission||18-Aug-2020|
|Date of Decision||18-Aug-2020|
|Date of Acceptance||28-Oct-2020|
|Date of Web Publication||31-Dec-2020|
Dr. Twinkle Agrawal
Department of Community Health, St. John' s Medical College, Sarjapur Road, Bengaluru - 560 034, Karnataka
Source of Support: None, Conflict of Interest: None
Background: Optimal management of cardiovascular diseases (CVDs) in developing countries is hindered by challenges among patients, caregivers, and health-care providers, understanding which is critical for CVD control.
Objective: To explore the perspectives of patients with CVD, their caregivers, and health-care providers on the burden of the disease and challenges in management and to evolve strategies for improvement of care.
Methods: A qualitative study using focus group discussions (FGDs) with patients and caregivers and in-depth interviews (IDIs) with care providers was conducted. Thematic analysis of data from FGDs and IDIs was done by inductive examination of textual information. Key subthemes and themes that emerged were recorded.
Results: A total of 12 FGDs and 13 IDIs were conducted. Participants perceived CVDs as a big problem in both urban and rural areas. Lack of resources and time, lengthy and tedious procedures, high patient load, lack of awareness about standard treatment guidelines among private practitioners, and inadequate involvement of family members emerged as the key challenges in the control of CVDs. Training of private practitioners, nurse educators, and doctors in the public health system; strengthening of the existing national program; and greater involvement of family members in care of patients were the key strategic suggestions for improvement of care in CVD.
Conclusion: Control of CVDs is laced with many challenges which involve multiple stakeholders. Addressing this issue demands a multipronged approach with interventions directed at empowering the patient and the caregivers and enhancing their involvement in care along with strengthening the health system.
Keywords: Cardiovascular disease, focus group discussion, in.depth interview, qualitative
|How to cite this article:|
Fathima FN, Agrawal T, Nidhin P, Xavier D. Situational analysis of practice patterns and challenges in cardiovascular disease management: A qualitative study. Int J Non-Commun Dis 2020;5:171-7
|How to cite this URL:|
Fathima FN, Agrawal T, Nidhin P, Xavier D. Situational analysis of practice patterns and challenges in cardiovascular disease management: A qualitative study. Int J Non-Commun Dis [serial online] 2020 [cited 2021 Apr 22];5:171-7. Available from: https://www.ijncd.org/text.asp?2020/5/4/171/305997
| Introduction|| |
Cardiovascular diseases (CVDs) are the leading cause of mortality worldwide and in India.,,, The prevalence of CVD is 8%–10% urban and 3%–4% in rural India. The prevalence of modifiable risk factors for CVD is high in Indian population.,,
Multiple interrelated and complex factors determine CVD control. Most preventive strategies are related to policy, health system, health promotion, and simple programs aimed at secondary prevention.
Create registry data from 89 hospitals in 50 cities across India has documented that Indian patients have unique features related to acute coronary syndrome. These include young age, low socioeconomic status, delay in reaching hospital, difficulty in getting evidence-based treatments, and suboptimal outcomes. Low control rates, lifestyle, low awareness levels, and health-seeking behavior are matters of concern. Majority of patients in India pay out-of-pocket for treatments.
Challenges exist for appropriate care among patients, caregivers, and health-care providers. Barriers may be due to patients (socioeconomic issues, competing medical conditions, and lack of motivation/knowledge) or to health system barriers (cost of care or lack of a multidisciplinary team, communication, and organizational problems).,
Understanding and overcoming patterns of care and challenges is critical in CVD control. This qualitative study aims to explore the perspectives of patients with CVD, their caregivers, and the health-care providers on the burden of the disease, challenges in management, and strategies for improvement of care.
| Methods|| |
Our study was conducted in urban and rural localities in and around Bengaluru city. Rural areas included villages under Sarjapur PHC. Urban areas were slums in Bengaluru city.
Our study participants included three groups of people:
- Community dwelling and hospitalized patients with hypertension, diabetes, or coronary artery disease
- Caregivers of patients with the above conditions
- Health-care providers involved in care of patients with the above conditions.
Patients and caregivers were recruited in consultation with social scientists. Separate discussions were held for patients and caregivers stratified based on gender and age. Health-care providers included private practitioners; medical officers at government PHCs; practitioners of alternate systems of medicine; physicians, endocrinologists, and cardiologists at private teaching hospital; and medical officers of the outreach center of the same hospital.
Ethical approval for the study was obtained from the Institutional Ethics Committee. Study procedures were explained in local language, and written informed consent was obtained from the participants. No remuneration was paid for participation in the study.
We used qualitative methods including focus group discussions (FGDs) and in-depth interviews (IDIs). FGDs were conducted with patients and caregivers and IDI with health-care providers. The data were collected between August and September 2014.
Qualitative approach was based on grounded theory, and domains in the topic guide were drawn from literature and experience of the research team., We generated a theory to explain the reasons for current practices in CVD with respect to behaviors of patients, caregivers, and health-care professionals and to identify the challenges therein. We prepared separate topic guides with open-ended questions for each group. Questions were designed to start discussion around broad areas. Prompts were used to ensure that issues relevant to the research question were discussed.
Data collection was done by a team of researchers with training and experience in qualitative study methods. Study team consisted of one interviewer and one note taker for each IDI/FGD. The IDIs and FGDs were conducted in local language, recorded on a digital audio recorder, and transcribed verbatim into text. Handwritten field notes were typed using a word processing program by a bilingual social scientist. The recordings were edited and checked for completeness by a second independent bilingual person.
FGDs were organized within the communities at locations identified by the social scientist and at times convenient to participants. The trustworthiness of the research findings was ensured using Lincoln and Guba criteria [Table 1].
Thematic analysis of data from FGDs and IDIs was done by inductive examination of textual information. Coding was done as a two-step process: key phrases were coded line-by-line into a framework based on the topic guide. Additional themes that emerged from the data were added. The data were recoded using the revised framework. Detailed memos were written for each code to look for comparisons and relationships. Key subthemes and themes that emerged from the data were recorded.
| Results|| |
A total of 13 FGDs were conducted in which 103 people participated including 57 females and 46 males, 39 patients, and 64 caregivers. Group sizes ranged from 8 to 11 participants. A total of 12 IDIs (6 urban and 6 rural) were conducted with health-care providers. Sessions typically lasted 30–45 min.
Analysis of textual data resulted in emergence of interrelated themes, underpinned by subthemes. Three main themes emerged from our data: (1) high burden of disease and pattern of care, (2) challenges and difficulties in the management of CVD, and (3) strategies and suggestions for improvement of CVD care. The key themes and subthemes that emerged from our analysis are depicted in [Table 2].
Based on the key themes and subthemes that emerged from the FGDs and IDIs, we generated a theory to describe the perspectives of the patients, caregivers, and health-care providers on CVDs. According to our theory, control of CVDs is laced with many challenges which involve multiple stakeholders. Many challenges were related to social dynamics addressing which demands multipronged approaches.
Theme 1: High burden of illness and pattern of care
Subtheme 1: High cardiovascular disease burden
All study participants were of the unanimous opinion that CVDs were major health problems in both rural and urban areas. Most patients and caregivers said that they were present since many years in their families.
Subtheme 2: Diagnosis by opportunistic screening
Regarding circumstances at diagnosis, some patients reported having general symptoms (tiredness and headache). Mostly diagnosis was made incidentally when the patients sought care for other illnesses.
Majority of primary care doctors opined that they diagnosed hypertension and diabetes by opportunistic screening, whereas doctors at tertiary hospitals dealt with patients with complications.
Subtheme 3: Regularity of checkups and adherence to medication
A dominant subtheme that emerged from FGDs was that patients sought care only when they had health problems. Most patients did not go for regular checkups.
Patients reported taking medication as a habit. However, they used old prescriptions or empty blister packs for refills from pharmacy. Older patients forget medication, especially during travel and social functions and do not come for regular follow-ups as they do not have anyone to accompany them.
Some patients reported stopping medications when blood pressure or sugar reading was under control and some reported trying home remedies.
One caregiver said, “We use Amrta-balli kashaya, “shankapushpa rasa” for diabetes, when symptoms did not reduce, we went to clinic.”
The practice of “doctor shopping” was common on the advice of friends and neighbors. Some patients felt that follow-ups are not helpful as their disease is not “cured” even after consultation.
Subtheme 4: Gender differentials in caregiving
Female caregivers consisted of daughters-in-law, daughters, and granddaughters. Sons were the predominant male caregivers. Female caregivers monitored medicine intake and diet, while male caregivers paid for care, facilitated transport, and hospitalization. Majority of caregivers said that they would be willing to do anything for care of their loved ones.
A caregiver of a hospitalized diabetic patient said, “My mother's health is important, money is secondary. It is my duty.”
However, this view was not shared by patients who felt that their illness resulted in familial conflicts. One patient said that his son resents his disease and often says “How much do I have to spend on you?”
Many caregivers opined that they fulfill their duties toward the patients, but the patients themselves do not cooperate and indulge in unhealthy practices.
Subtheme 5: Advice by health-care professionals
Changes in diet, physical activity, and medication were commonly advised by doctors. Very few doctors advised on tobacco cessation, maintaining ideal body weight and stress management.
Subtheme 6: Health insurance
Most patients did not have health insurance. Among those who had enrolled into government schemes, few had renewed their cards. Some patients had ESI coverage. Only one patient reported having private insurance as her son worked in a software company.
Subtheme 7: Standard treatment guidelines
Doctors working in tertiary care medical college hospital followed standard treatment guidelines. However, private practitioners and government doctors were not up-to-date about recent guidelines.
Theme 2: Challenges in the management of cardiovascular diseases
Subtheme 1: High cost of care
High cost of care emerged as a dominant subtheme in FGDs in both urban and rural areas. Some hospitalized patients had to take loans or pawn assets to cover expenses.
One caregiver said, “Should we look at the face of money or the face of life?”
Our study illustrates that the elderly missed medication because they did not feel comfortable asking caregivers for money. Another elderly patient said, “How can I ask them? They have their own problems.”
Private practitioners opined that most patients paid for consultation owing to the belief that disease does not subside if doctor is not paid.
Subtheme 2: Inability to avail leave
Lack of paid leave was a major subtheme that emerged among young patients in urban slum settings. For females, employed as domestic helps and males, working as daily wage semiskilled workers, absence from work resulted in loss of wages.
A middle-aged diabetic patient said, “My employer won't grant leave. What can I do?”
Subtheme 3: Access to health care
Majority of patients in urban areas accessed care from private practitioners. However, nonavailability of doctors in government settings was common. Nonavailability of medicines in government hospitals and nonavailability of specific brands of tablets in a nearby pharmacies were cited as reasons for nonadherence.
Subtheme 4: Lengthy and tedious procedures in hospitals
Lengthy and tedious procedures in crowded hospitals was commonly reported by patients and caregivers from rural areas who had to travel long distances to reach hospitals.
One caregiver said, “For a blood check-up, we go early in the morning and wait in queue for tests and again to see the doctor, the whole day goes off.”
Subtheme 5: Attitude of doctors
Many patients reported attitude of doctors as a challenge. Most patients felt that doctors do not spend enough time to explain about their disease.
One patient said, “Doctors just write medicine and send us away.”
Some patients felt that doctors get angry at patients and caregivers when asked too many questions and that support staff were not courteous.
Subtheme 6: High patient load
Doctors felt that they do not get adequate time to advice patients on lifestyle, medication adherence, and to clarify doubts due to high patient load. In tertiary care hospitals, each doctor sees around 40–60 patients in a session, resulting in very little time to counsel patients. Doctors from alternate systems of medicine also treat diabetes and hypertension and prescribe allopathic medicines.
Subtheme 7: Lack of awareness among patients
IDIs among doctors revealed lack of knowledge about complications among patients as a challenge. In addition, doctors opined that patients who take many medicines tend to get confused.
Subtheme 8: Lack of involvement of family members
A dominant theme that emerged from the key informant interviews was lack of involvement of the family members in care of patients. Doctors reflected that many patients came alone for checkups.
This was concurred by patients, one of whom said, “My son can't come. He has to work.”
Subtheme 9: Gaps in the public health system
The main challenge faced by doctors in government system was irregular supply of medicines. Patients do not value free medicines as they believe that they are of inferior quality.
Government PHCs have inadequate laboratory support and patients referred to higher centers do not go due to time and distance barriers.
Other barriers that were identified by our study were high costs of fruits and vegetables, lack of parks, and knee joint pain.
Theme 3: Strategies for improved care
Subtheme 1: Self-care
Many patients believed they had a role to play in their own health. Taking medicines on time, regular follow-ups, changes in lifestyle, and self-care were listed as ways by which they could contribute toward their own health.
Caregivers believed that primary responsibility for care lies with the patients themselves. Although caregivers were willing to provide support, they were not clear about their exact role.
Subtheme 2: Strengthen health-care system
The main suggestion for health-care sector by patients and their caregivers was having all facilities (consultation, laboratory, and pharmacy) under one roof to increase accessibility.
Patients and caregivers expected doctors to give concessions and to spend more time for examination and advice.
Patients and caregivers suggested that improvement in cleanliness, good quality care, and availability of doctors and medicines at government hospitals would contribute toward better outcomes.
Health-care providers felt that government should increase budgetary allocation for health. Doctors suggested that health education messages should be reinforced at every opportunity.
One doctor from government system suggested need to strengthen the existing national program on CVD. He felt that fixed day subcenter level clinic for the treatment of diabetes and hypertension would be useful.
The doctor said, “The government should plan a program like DOTs for diabetes and hypertension.”
Health-care providers expressed need to train nurses and other members of health-care team in counseling patients on lifestyle.
Subtheme 3: Involve family members in care
Many doctors stressed on need to involve caregivers for tasks such as supervising medication intake, arranging finances, accompanying patients during follow-ups, and support lifestyle changes.
One doctor in a tertiary care hospital said, “The patient and the caregiver should partner with us.”
| Discussion|| |
This qualitative study highlights perceptions of patients, caregivers, and care providers on CVDs. Our results highlight the high burden of CVDs, different patterns of care, challenges in the management of CVDs, and the probable solutions.
High burden of CVDs and its risk factors among Indians is a well-documented fact.,,, Recognition of the problem and taking cognizance of its magnitude is the first step in disease control. Our study shows that all stakeholders concur on CVDs being an important health problem that needs to be addressed.
A dominant subtheme that emerged from our study is irregularity of checkups and nonadherence to medications. The concept that, unlike in acute diseases, care in CVDs necessitates regular and timely follow-ups has not percolated among patients. A systematic review of the studies done on medication adherence among South Asians revealed that medication adherence rates to be low. A study done by Fathima et al. reported an adherence rate of 40.1% among diabetics and hypertensive patients. Another study done by Venkatachalam et al. reported an adherence rate of 24.1%. In this study, 51.6% of patients forget to take medication regularly, 59.8% had difficulty remembering their medication, 53.6% stopping medication upon feeling better, and 55.2% stopping medication upon feeling worse.
A multicentric qualitative study done in India and Canada to explore the barriers and facilitators to evidence-based drug use in CVD revealed that patients purchased medications out-of-pocket from private pharmacies to avoid long commutes, lost wages, and unavailability of medications in public health system.
Our study revealed high cost of care as important challenge faced by patients. This has also been reflected in a study by Fathima et al. who reported that a significantly higher proportion of patients who perceived that medication was not expensive were fully adherent (51.2%) compared to those who perceived medication as expensive (27.6%).
Role of the caregiver in the management of CVDs is very important. While many studies look at caregiver burden, very few discuss challenges in caregiving. A survey done to assess caregivers' needs in diabetes reported that caregivers listed medical management (49%) of diabetes and diet-related issues (54%) as challenges. In our study, the main challenge faced by caregivers was lack of paid leave to accompany elderly for regular checkups. A systematic review of qualitative studies aimed at reducing CVD risk reported that although families may be targeted as units of intervention, initiation and maintenance of changes by its members may be challenging due to competing interests from other aspects of family life. Resistance from family members was reported as a barrier to adopting heart health behavior.
In our study, the main challenges among doctors working in government settings and private practitioners was lack of awareness about standard management guidelines. Similar findings were reported by Ferrante et al. in a qualitative study done in Argentina.
In translating research into action for diabetes study, physicians attributed barriers primarily to patients (socioeconomic issues, competing medical conditions, and lack of motivation) or health system (cost of care and lack of a multidisciplinary team).
Control of CVDs in India demands a multipronged approach with interventions at more than one level. Empowering patients and caregivers and enhancing their involvement in care is integral to improved outcomes. Repeated and sustained health education could be achieved by involving doctors, nurses, pharmacists, and laboratory technicians to deliver small and relevant health messages at every opportunity.
There is a need to strengthen the National Program for the Control of Diabetes, Cardiovascular Diseases and Stroke. Key issues that need to be addressed include training of doctors and other members of the health team, ensuring sustained availability of drugs and monitoring equipment, screening, primary prevention, and development of a functional system for referrals.
The strength of our study is that we interviewed multiple stakeholders who understand the issue in depth. We included patients, caregivers, and care providers in varied settings, which helped us to capture an all-inclusive picture of the situation. Our study is the first comprehensive qualitative study on CVD from India. However, India being a diverse country, challenges are likely to differ in other regions. Our study, nevertheless, points out the need for further qualitative studies to understand the interplay of different factors that play a role in CVDs.
| Conclusion|| |
From the results of our study, we conclude that the control of CVDs is laced with many challenges which involve multiple stakeholders. Addressing this issue demands a multipronged approach with interventions at more than one level.
Ethical approval statement
Ethical approval statement Ethical approval for the study was obtained from the Institutional Ethics Committee, St John's Medical College.
Financial support and sponsorship
AstraZeneca India and the Division of Clinical Research and Training, St. John's Research Institute.
Conflicts of interest
There are no conflicts of interest.
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