Exploring the opinion of stakeholders about self-care,home care and hospital management of heart failure patients: A qualitative study

Abstract

Introduction

Heart failure is a widespread chronic cardiac illness with varying etiologies. If the HF patients manage themselves at home by following the appropriate advice by healthcare professionals, they tend to have better quality of life and less readmissions. This study was aimed to identify and explore practices of self-management by heart failure patients, home management of heart failure by their family caregivers and hospital management by healthcare providers.

Methods

A qualitative study was conducted in a tertiary care center in Northern India on participants (patients, their family caregivers, doctors and nurses) who were recruited purposively and interviewed individually by principle investigator using semi-structured questionnaires. Interviews were audio recorded and transcribed after taking informed consent. Iterative process including coding, reviewing and analyzing was done by four researchers and themes were finalized.

Results

Total 41 participants (15 patients, 12 family caregivers, 4 doctors and 10 nurses) completed the interviews. It was observed that patients and family caregivers were not able to manage heart failure efficiently. Nurses and doctors reported many barriers to provide specialized care to these patients.

Discussion

There were definite barriers and challenges in the management of heart failure symptoms by the stakeholders. For the patients and family members who suffer this debilitating illness, managing heroically is a challenge. It is important to develop self-care management protocol for the heart failure patients. Healthcare professionals must overcome the barriers to train patients and family caregivers. Multidisciplinary integration can fulfill the gap in providing care to such patients.

Keywords

Heart failure qualitative research self-management

Introduction

Heart failure (HF) is a common cardiovascular illness responsible for significant hospital readmissions especially, in older ages.^1,2 It has been reported that Indian patients of HF present at least a decade earlier than the western counterpart thereby, increasing significant morbidity, mortality as well as an increased burden on healthcare cost.³ In addition to guideline-directed medical therapy (GDMT), patients are educated about how to care for themselves at home. Managing patients at home includes keeping themselves physically fit, periodic weight monitoring, taking medications as prescribed, adhering to dietary precautions and regular follow up.^4,5 Both patients and caregivers play a pivotal role in the overall management of HF when it comes to a team approach to HF management. However, living with the disease is itself challenging for both patients and caregivers as coping with symptoms and complex therapeutic regimen is tough.⁶ Following this they exhibit depression and limited functional capacity. It has been seen that effective management of HF requires partnership and trust within and between patients, families, and healthcare professionals.⁷

We do not know how much patients and their families know about HF and the necessary ways to tackle symptoms in settings like ours. A paucity of time and overburdened health facilities find themselves unable to enquire patients and their caregivers about how do they manage themselves at home; what are the barriers and challenges while caring for such patients; how and when do they decide to visit a health facility for intervention etc. Qualitative research is warranted to explore the impact of caregiving on the management of HF symptoms and the complexity of care.⁸ Various factors act as barriers while adopting and implementing treatment due to which patients do not get the required treatment.⁹–10 The barriers faced by cardiologists while managing HF patients are also not well determined and such issues are never addressed even in the tertiary care centers. Although there are standard guidelines by advisory committees regarding HF management with or without various comorbidities still, data is lacking on how far the low resource settings like ours adhere to such recommendations. In addition to this, it has been reported that even trained healthcare workers feel hesitant in performing interventions required to empower heart failure patients in managing themselves.¹¹ Nurses rendering care to HF patients may not be trained always to manage HF including dose titration of medications. Moreover, if their interaction with patients is limited, they may be unable to understand patients’ perspectives of HF. Lack of time for patient education and lack of coordinated care among various specialties are the other barriers to provide optimal care.¹² So, if any disease management program has to be effective, addressing issues from patients, family caregivers, doctors, and nurses are necessary.

The main focus of the current study was to gain insight into how the HF is being managed by patients, their family caregivers, cardiologists, and nurses. HF management practices of patients mean how patients identify worsening symptoms and manage by themselves at home. HF management practices of caregivers, mean how to they manage HF symptoms, challenges, and barriers faced by them while caregiving. And regarding healthcare workers (doctors and nurses), how do they manage in resource-limited settings. Whether they can lessen the gap between standard guidelines and actual care being delivered to these patients or not. Keeping this in mind, this study was conducted to explore and identify the practices of self-care, home care, and hospital management of heart failure by the patients, their family caregivers, and health care providers (doctors and nurses).

Methods

The study was conducted in a tertiary care center in Northern India from 4th June – 31st July 2018.

It was a qualitative study to explore the practices of self-management, home care management, and hospital management of HF by the patients, their family caregivers, and healthcare workers (doctors and nurses) respectively. Study participants were patients suffering from HF attending cardiology OPDs (out-patient departments) of a tertiary care center, their caregivers, nurses, and doctors managing the heart failure. Participants meeting inclusion/exclusion criteria were selected by the principal investigator.

Inclusion and exclusion criteria

Patient participants – Patients suffering from heart failure for 6 months or more having left ventricular ejection fraction <40% with New York Heart Association (NYHA) class II to IV were included in the study. Patients with comorbidities were not excluded. Patients having unstable heart failure were excluded.

Unstable heart failure – Acutely decompensated heart failure (ADHF) when a patient requires in-patient management for worsening of symptoms. We didn’t enroll such patients as they are directly admitted to the cardiac intensive care unit from the emergency area.

Family caregivers – These were identified by the patients as actively involved in planning and delivering care and were accompanying the patients at the time of their scheduled visit to the hospital.

Doctor participants – Cardiologists who had working experience of 3 or more years were included in the study.

Nurse participants – Nurses who were working in cardiology OPD for 6 months to 10 years were chosen.

Participants were selected purposively and interviewed face to face regarding their current practices of management of heart failure symptoms separately after obtaining written consent.

The research team consisted of a principal investigator (BK), an M.Sc. cardiovascular and thoracic nursing student, two post-doctoral nursing faculty members (SK and MD) having experience in qualitative methods, one professor (AB) and one associate professor (PB) from the department of cardiology and one faculty member (KK) from the department of biostatistics.

Data collection

Data were collected using in-depth semi-structured interviews using interview guides (Supplemental Table 1 and Table 2) by principal investigator in the clinic. Principle investigator introduced herself before initiating the interview. The purpose and need of the study were explained to the participants. It was clearly announced that the treatment of participants will not be affected by their participation or non-participation in this study. The average time to conduct an interview was explained to the participants in the beginning. The tool was pilot tested initially on four participants and appropriate changes were incorporated to enhance the feasibility and clarity.

The interview lasted for 10–15 minutes. No other person was present in the clinic apart from the participants and principal investigator during the interview. Interviews were audio-recorded after taking informed consent from the participants. They were transcribed and the verbatims were written in their language. Data saturation was not awaited as the interview guide was semi-structured. Transcripts were returned to the patients and caregivers during their next scheduled visit to comment upon. It was not returned to the doctors and nurses as they affirmed their responses. Information regarding demographic characteristics and status of illness was obtained from the patients. They were enquired about how do they monitor and manage themselves at home; adhere to the therapeutic regimen; follow up; identify worsening symptoms and anticipate prompt action. Family caregivers were asked about how long they were actively taking part in the care of the patient and what is their role in the management of heart failure patients, how do they tackle emergencies and how do they make patients adhere to the prescribed therapy. Prompts were given in between to facilitate clarity of their responses.

A separate semi-structured interview schedule was prepared for family caregivers of heart failure patients, nurses working in cardiology OPD, and cardiologists managing heart failure patients. Four cardiologists having work experience of more than three years in cardiology were interviewed regarding how do they classify and treat heart failure patients; schedule follow up; and what are the barriers and facilitators of providing optimal specialized care to these patients. Ten nurses working in cardiology units form the last 6 months to ten years were interviewed regarding the burden of heart failure in the same institute; the way they handle emergencies and anticipate urgent intervention, barriers, and facilitators of providing optimal care to such patients. Three patients, three caregivers, two nurses, and one doctor refused to be study participants due to lack of time. No repeat interviews were carried out.

Data analysis

The recorded interviews of participants were listened to, ranscribed to written form, checked for accuracy, and anonymized afterward. The data were openly coded by four coders and similar codes were written together to create themes. Themes and subthemes were made and reported using six-step approach.^13,14

A common consensus of coders was considered regarding themes generation. No electronic software was used to manage the data. To clarify the process of themes generation, the statements of participants were given in their original verbatims along with their codes. Participants didn’t provide any feedback on the findings of the study.

Trustworthiness of the study was ensured by multiple ways. For credibility, we made observation of the participants for long time (nearly 1 year) in the same area regarding their practices of heart failure management. Data triangulation was done by making the field notes and collecting data from various resources like hospital database and different type of participants. Audit trail was done as the data was systematically organized, documented and rechecked by all the authors at regular intervals. The findings like ‘common HF symptoms’ can be transferable globally but the barriers and challenges faced by all the participants regarding HF management may be transferable to developing nations.

Ethical considerations

The study was approved by ‘Institute Ethics Committee of Post Graduate Institute of Medical Education and Research Chandigarh, India’ and was registered in CTRI (Clinical Trials Registry-India) also. Participants were told about the aim of the study and those who consented to participate, were included in the study. Written informed consent was obtained from the participants. The study protocol conforms to the ethical guidelines of the 1975 Declaration of Helsinki, revised in 2000 as reflected in a priori approval by the institution's human research committee.

Results

Total 41 participants (15 patients and 12 family caregivers, 4 doctors and 10 nurses) completed the interviews. The mean age of patients and family caregivers was 54.9 ± 11.6 years and 44.6 ± 14.7 years respectively. The rest of the demographic and personal characteristics of the patients and caregivers are mentioned in Table 1. In this study, various themes and subthemes were finalized after analyzing the interviews separately with HF patients, their family caregivers, doctors, and nurses caring for these patients. Majority of the participants were patients (36.6%) followed by caregivers (29.2%), nurses (24.4%) and doctors (9.7%).

Table 1.

Baseline Characteristics of patients and caregivers who underwent one to one interview regarding their current practices of self- management of heart failure.

Characteristics	Patients n = 15	Family caregivers n = 12
Age (in years)
Mean ± SD	54.9 ± 11.6	44.6 ± 14.7
Gender n (%)
Male	13 (86.7)	05 (41.7)
Female	02 (13.3)	07 (58.3)
Habitat n (%)
Urban	06 (40.0)	04 (33.3)
Rural	09 (60.0)	08 (66.7)
Marital status n (%)
Single	01 (10.0)	02 (16.7)
Married	13 (86.7)	10 (83.3)
Widow/widower	01 (10.0)	02 (16.7)
Educational status n (%)
Illiterate	05 (33.3)	04 (33.3)
Primary school	02 (13.3)	06 (50.0)
High school	05 (33.3)	01 (08.3)
Graduate	03 (20.0)	01 (08.3)
Occupation n (%)
Skilled	02 (13.3)	03 (25.0)
Professional	01 (06.7)	02 (16.7)
Agriculture	02 (13.3)	05 (41.7)
Not working	10 (66.7)	02 (16.7)
Socio-economic status n (%)
Upper class	07 (46.7)	06 (50.0)
Upper middle class	01 (06.7)	01 (08.3)
Middle class	03 (20.0)	03 (25.0)
Lower middle class	04 (26.7)	02 (16.7)
Lifestyle pattern n (%)
Sedentary	07 (46.7)	04 (33.3)
Mild worker	03 (20.0)	05 (41.7)
Moderate worker	05 (33.3)	03 (25.0)
Dietary habits n (%)
Vegetarian	08 (53.3)	05 (41.7)
Non vegetarian	07 (46.7)	07 (58.3)
Substance use n (%)	07 (46.7)	03 (25.0)
Alcohol	06 (40.0)	02 (16.7)
Cigarette/bidi	03 (20.0)	02 (16.7)
Any other	01 (06.7)	0

Interviews with patients

Nine themes were generated using content analysis of interviews with the patients who were suffering from HF for at least six months (Table 2). Patients revealed that their family members played an important role in their care. They reported classical features of HF like breathing difficulty, pedal edema, generalized weakness, and few miscellaneous symptoms.

Table 2.

Themes and subthemes from interviews with patients and caregivers who underwent one to one interview regarding their current practices of management of heart failure.

Patients	Caregivers
Common symptoms of patients having heart failure• Breathing difficulty• Generalized weakness• Pedal edema• Other symptoms	Caregiver as a partner in care • Since the beginning of sickness
Monitoring of symptoms• Monitoring when required• Monitoring daily• No monitoring at all• No record maintenance of vital parameters	Symptoms of patients and their home management • Mental tension and breathing difficulty• Specific symptoms of heart failure• Managing at home by following the advice
Strategies to handle breathing difficulty• Ancillary measures • Breathing exercises	Deciding management of emergency conditions • Take consultation for breathing difficulty• Didn’t face emergency situations yet
Components of awareness of lifestyle modifications• Daily walking• Breathing or other exercises• Salt and water restrictions• Avoidance of oily and spicy foods	Knowledge regarding lifestyle modifications • Knowledge of medication schedule• Knowledge of salt and water restriction• Knowledge of limiting oily foods• No knowledge of restrictions
Effect of illness on personal and professional life• Depression due to illness and family issues• Unable to enjoy life• Unable to work as previous• No effect	Awareness about mandatory aspects of care • Lack of awareness regarding routine exercises• No recording of vital events• Helping patients for follow up• Supporting patients when they feel low• Getting reassurance from the experts
Reactions on ineffective treatment schedule• Want to leave medicines• Medicines are effective	Effect of illness on daily life of caregivers • Disturbance at job• No significant effect
Deciding to visit hospital • Visit as scheduled• Visit as required	Need of specialized care • Felt need of specialized advice
Preventive measures to minimize hospitalization• Compliance to the therapy• No preventive measures

The themes and subthemes are represented by bold letters and non-bold letters respectively.

Symptoms of patients having heart failure – Difficulty in breathing was the most common symptom reported by the patients. They reported multiple specific or non-specific symptoms of heart failure like breathing fatigue, chest pain, generalized weakness, headache, and constipation, etc. Verbatim: I feel difficulty in breathing, generalized weakness in the body always, swelling in the feet, and loss of appetite. These are the problems with me. – Participant 1

Monitoring of symptoms – Patients gave variable responses regarding the frequency of monitoring of their symptoms ranging from daily monitoring of self to never monitored for any symptom. None of the patients used to keep a written record of the occurrence of worsening symptoms or adverse events and their vital parameters like pulse rate, blood pressure, weight or urine output.

Strategies to handle breathing difficulty – Difficulty in breathing was the most common symptom reported by the patients. Patients verbalized that they take rest and sit quietly when they experience breathing difficulty. They used to perform a few breathing exercises. If the problem was severe, they took local consultation.

Components of awareness of lifestyle modifications – Patients reported that they were not taught about specific exercises. Many of them used to walk daily. They were quite aware of dietary restrictions like reducing salt and water intake and limiting oily foods.

Effect of illness on personal and professional life – Due to the disabling illness, patients reported depression. Many patients verbalized overthinking about the disease. Few of them reported family issues as the reason for their depression. Mixed responses were noted regarding their ability to enjoy life. Many of the patients found themselves unable to work as previously. Functional capacity was reduced due to the illness. Majority of the participants reported that HF had badly impacted their lives especially related to work.

One of the participants said – Previously I used to watch television, talk to family members, etc. Now, I don’t watch television. I don’t feel like talking over the phone also. – Participant 11

Another verbalized – In a week, sadness and anxiety occur 2–3 times due to illness. I feel like family members are in problem because of me – Participant 14

Reactions on ineffective treatment schedule – Few of the patients found treatment as satisfactory while others found medications ineffective. Many of the participants reported that they wanted to leave medications. However, a few of them reported that the medicines respond to their symptoms and hence they are satisfied with the treatment.

Participant 3 said – Medicines don’t work properly. I feel like to leave medicines. I leave medicines in between.

Deciding to visit the hospital – This theme explained the ways through which patients decided when to visit the hospital. The majority of them visited as per the written schedule on the OPD card. If a breathing problem occurred, they visited the emergency department.

Preventive measures to minimize hospitalization – Patients reported that except for taking medications, they didn’t take any preventive measures for the occurrence of HF symptoms. If the symptoms worsened, they visited the local hospital. They didn’t realize the chronic nature of the illness that could lead to readmissions due to lack of self-care.

Interviews with the family caregivers of HF patients

Seven themes and various subthemes were generated through content analysis of interviews with the family caregivers who were an active partner in the care of HF patients since the occurrence of symptoms (Table 3). They reported that the patients experience a variety of heart failure specific and non-specific symptoms. They handled many problems in home care settings only by following the advice given by health care professionals.

Table 3.

Themes and subthemes from interviews with doctors and nurses who underwent one to one interview regarding their current practices of self- management of heart failure.

Doctors	Nurses
Average no. of heart failure patients visiting OPD per day	Average no. of patients attending OPD
Classification of HF patients• Based on LV function• Based on symptoms of presentation• Based on functional class and its severity	Symptoms requiring hospitalization• Hemodynamic instability• Breathing difficulty and rhythm disturbances
Decision of follow up of HF patients• Based on their clinical status and NYHA status• Based on their functional class and symptoms• Based on the requirement of frequent drug changes• Based on the compliance	Nursing interventions for HF patients• Patients requiring immediate attention• Interventions specific to heart failure• Interventions related to volume restriction
Problems faced while treating HF patients• Lack of time• High cost and affordability• Compliance, illiteracy and poverty• Contradiction between patient and doctor• Inability of patients to visit from far places• Non availability of written material for patients	Advice at follow up visit• Lifestyle modifications• Medication adherence• Maintenance of hygiene• Next follow up• No specific advice
Barriers to provide best treatment to HF patients• Patients’ overload• Lack of special HF clinic• Lack of time• Lack of awareness, affordability and social support	Opinion regarding protocol based nursing management• Help in improvement of patients• Help in improvement of staff
Advice to the patients except for medical therapyAdvice related to dietary precautionsAdvice related to lifestyle modifications	• Barriers in provision of specialized careHigh patient burden• No active role in patient management• Lack of updated knowledge • Communication gap• Lack of nursing protocols
Ensuring adherence to treatment By asking the patient• By asking the family members • By monitoring the clinical status	Suggestions regarding specialized care• Optimization of no. of patients• Improve and update knowledge of staff• Specialized care set up• Make written material available to patients
Advising daily record of vital parameters• Weight and BP monitoring
Suggestions for management of HF patients through nurse led clinic• Establishment of heart failure clinic• Structured teaching for heart failure patients• Team work

The themes and subthemes are represented by bold letters and non-bold letters respectively.

One of the participants said – He (patient) is mentally upset. Other symptoms are: excessive sweating, bradycardia, breathing difficulty, pain in legs, and constipation – Participant 8

Deciding management of emergency situations – Many of the caregivers felt breathing difficulty as an emergency and they consulted locally for it. A few caregivers didn’t notice any emergency condition and hence continued scheduled follow up.

Participant 1 verbalized – We take our patient to the hospital due to fever and breathing problems. When medication dose is missed, we consult locally.

Knowledge about lifestyle modifications – Caregivers told that lifestyle modifications mainly include dietary modifications, exercises or physical activities, and adherence to medications regimen. Caregivers were not aware of the type of exercises to be performed by the patients. majority of them were aware of dietary restrictions especially salt, water, and oily foods.

Participant 8 told – Health care professionals have advised us not to give juice. We provide tea without sugar, boiled vegetables, low salt and, spices. They (health care professionals) told to take 1.2– 2 liters of water a day)

Awareness about mandatory aspects of routine care – Mixed responses were noticed regarding awareness of caregivers about mandatory aspects of care like motivating or helping patients to carry out physical activities as per the advice; recording vital parameters like BP (blood pressure), heart rate, weight and, urine output; accompanying patient in routine follow-ups and motivating patients when they feel low. All the caregivers accompanied patients for follow-up and adhering to medications but a majority of them were not aware of the importance of physical exercises and keeping a record of symptoms.

One of the participants told – We don’t maintain any diary but sometimes if BP is monitored, we record it on a paper and show it to the doctor at the time of follow-up. Whenever he feels low, we reassure him that your treatment is being taken from best place and you will be fine.

Effect of illness on caregivers’ daily life – Although they play an active role as a partner in the routine care of patients but still, they come across certain problems at the job as well as in-home settings like arranging for holidays, money for treatment etc.

Felt need of specialized care – Caregivers of the patient adapted themselves regarding symptoms and the ways to look after the patients. Sometimes they felt the need for a specialized person like any health care professional who can teach them the necessary ways to keep patients healthy.

Interviews with doctors

Eight themes and various subthemes were generated through content analysis of interviews with the cardiologists (Table 3). All of the participants opined that approximately 20–30 patients of HF visit OPD per day. The no. was not fixed and average no. of patients visiting OPD kept changing.

Classification of HF patients – They mainly classified HF on the basis of left ventricular function, symptoms at presentation, NYHA class and echocardiography as per international norms of classifying HF patients.

Decision of follow up frequency of HF patients – Patients were followed up on the basis of their clinical status, functional class and their compliance. If compliance was not good, patients might need frequent drug changes. Hence, required to follow up frequently as compared to stable patients.

Problems faced while treating HF patients – One of the participants verbalized – Definitely, we are not able to devote sufficient time. They need extra time for counselling. We always try to tell about simple things like salt restrictions, water restriction and weight monitoring which is very much important in their management along with drugs. So we give time but probably not very sufficient. Because of illiteracy and poverty, there are problems of compliance and affordability. Patients are poor in recognizing the early signs and symptoms of deterioration in clinical status. Another problem is the patients who come from distant places, it is very difficult for them to come from far-away places for frequent follow ups. We are not providing any informational booklet for these patients.- Participant 1

Barriers to provide best treatment to HF patients – Doctors revealed that they came across many barriers while treating HF patients. Unlimited no. of patients, lack of special HF clinics, lack of time and lack of awareness, affordability and social support for the patient were major concerns.

Participant 2 told – Yeah, medication wise we are doing a good job but as already told, lack of time is a constraint. We cannot say the same thing to 25 people .One thing that can be done is, we can dedicate specific days of OPD for HF patients. Classes also can be taken for these patients.

Advice to the patients apart from medical therapy – Participant 4 explained – If time permits, dietary restrictions, recognition of early signs and symptoms of clinical deterioration, drug interaction, symptoms of drug side effects, exercise limitation as well as promote graded endurance training can be taught to the patients.

Ensuring adherence to treatment – Adherence to treatment was ensured through verbal report of patients and caregivers. Improvement in symptoms was also considered as an indicator of adherence to treatment.

Instructing patients to record vital parameters daily – Very few explained about instructing patients to record their vital parameters like heart rate, blood pressure, daily weight etc. They tell them to record these vital parameters on a paper or diary and bring at the time of follow up.

Suggestions for management of HF patients through Nurse led heart failure clinic – Due to unlimited no. of patients, healthcare personnel especially doctors were unable to spent adequate time with the patients to teach them how to take care of themselves. So they have opined the felt need of heart failure clinics led by nurses.

Participant 1 suggested – If we have dedicated HF clinic with adequate support staff it will be good to manage these patients. Definitely, it will be helpful for patients. If there will be dedicated HF clinics having the trained nurses in that specialty, many of the patients can be sent there for their lifestyle modification. The patients will be properly explained. It will save the time as well as it will be helpful for the patients. But the problem is to have a dedicated HF clinic.

Interviews with nurses

Seven themes and various subthemes were generated through content analysis of interviews with the nurses (Table 3). Everyone reported variable no. of patients visiting cardiology OPD. The reason was, patients did not go to nurses directly. They went to nurses after their routine follow-up to get injections or advice related to the medication schedule.

Symptoms requiring hospitalization – Nurses reported that the patients presented with a variety of symptoms. But breathing difficulty and chest pain were the commonest requiring prompt management. Patients are shifted to CCU (coronary care unit) if sick and couldn’t be managed in OPD.

Nursing interventions for HF patients – Nurses reported that they had no active role in patient management in OPD unlike wards and CCU as patients did not visit nurses directly. They only came for consultation regarding the medication schedule.

One of the participants said – We don’t manage these patients. So I cannot comment on this question. They first go to the doctor and then seek clarification regarding medications from the nurses. We don’t have an active role in the management of these patients here in OPD- Participant 2

Advice at follow up visit – Nurses were aware of the important components to be told to patients at follow up. But as very few patients visited directly to nurses due to the hospital policies, so the advice by nurses was limited.

Participant 1 verbalized – As such the patients do not come to us directly. They go to the doctor and some of them leave from there. Whatever the doctor writes them on their cards, we advise them the same. We advise them the medications and answer their queries regarding exercise and lifestyle modifications. We don’t have any written informational material for these patients.

Opinion regarding protocol-based nursing care – They opined, well-prepared protocols will be helpful for staff in rendering the best care to heart failure patients.

Participant 1 opined – Patients ask their queries many times. The questions which they ask the doctors, the same questions they ask from nurses. If we have well-defined disease management protocols, then we would know whatever we are teaching them is uniform and correct. Moreover, patients will not be confused. There will be no chance to confirm again and again. It will be time-saving also.

Barriers in the provision of the specialized care – The commonest barrier which nurses came across while providing care to HF patients was ‘overburden of patients’. Specialized care of HF patients was hampered due to an unlimited no. of patients (HF or with other cardiovascular illnesses) visiting OPD per day.

Suggestions regarding specialized care – To improve the care standards of HF patients, some of the suggestions could be incorporated in practice to make the staff competent in providing specialized care like optimization of no. of patients, improvement of knowledge of staff, specialized HF care set up and making written material available for such patients regarding self-care.

Discussion

Systematic evaluation of responses of participants provided a clear insight into how the patients manage themselves at home and the probable reasons behind readmissions in the hospital. Caregivers revealed that due to lack of awareness regarding preventable strategies, they were not able to encourage patients to remain asymptomatic for a considerable period and landed up in frequent health checkups or emergency interventions. Being in a tertiary care center, cardiologists were adhering to the international standards of classification of disease and prescription of drugs but due to paucity of time and lack of standard institutional protocols, they were not able to control emergency hospitalizations and the overwhelming burden of HF patients. Nurses working in cardiology OPD of the same institution were optimally knowledgeable regarding various aspects of care of these patients. Lack of clear roles and responsibilities and no nurse-led heart failure clinics in the OPD were the main obstacles to provide specialized care to HF patients. In-depth interviews with the participants allowed them to speak freely about their current practices of HF management. Dependability of the data couldn’t be checked. Though the findings of qualitative research do not produce evidence that is generalizable as quantitative research. The transferability of the current findings in other areas can be judged. Doctors and nurses working in the cardiology units were quite enthusiastic to share the challenges and barriers in providing optimal care to HF patients. Current study did not include dieticians, physiotherapists, and social workers who too contribute to the care of HF patients.

The most important findings of the current study revealed that the patients and their caregivers were not trained enough to tackle emergencies at home without consulting health care professionals. The reasons were never addressed as this study is one of the first of its kind in the institute. The multifactorial cause of their inadequacy of self-care was identified through systematic and detailed inquiry of their current practices to manage their symptoms.

Many reasons for the inadequacy of self-care practices of patients to manage HF symptoms were identified. Common reasons were no monitoring of vital events, parameters, and severity of symptoms; poor compliance to therapeutic regimen; financial constraints due to loss of a job; depression due to illness and its effects; lack of awareness regarding lifestyle modifications including dietary precautions; the indefinite response of medications on varying symptoms; no proper training of how to watch and handle emergencies at home; irregular follow-ups.

Caregivers play a pivotal role by involving themselves in the care of HF patients including understanding discharge instructions, follow up, and making patients adhere to the therapeutic regimen at home.¹⁴ In our study, family caregivers were involved in the care of all patients since the beginning of symptoms. Many barriers to provide optimal care by family caregivers of heart failure patients were identified. They included waxing and vanning symptoms and everlasting nature of the illness; lack of knowledge regarding diet, exercise, medications, and monitoring of vital parameters; monetary constraints; absenteeism from the job; lack of education regarding how to tackle emergent situations at home. As mentioned in a study by Moris et al., that due to unpredictable symptoms, patients feel helpless and become dependent on their caregivers which in turn increases the burden on caregivers.¹⁵ Hence it becomes important to make caregivers engaged in all the instructions being provided to the patients so that caregivers can contribute significantly towards clinical improvement of symptoms.

Although, the cardiologists were doing best on their parts related to diagnosis and treatment of heart failure patients, still their interaction with the patients and their family was so limited that patients felt hesitant to ask many questions. Moreover, language barrier and new doctors on every visit left the patients with the negative thoughts about their illness and treatment. These findings were consistent with Fry et. al. and Glogowska et. al. who stated that poor interaction of patients and attending physicians badly impacts patients’ care.^16,17 Nurses also play an important role in providing instructions to the patients and caregivers to comply with. In our study, the role of nurses in making patients aware of the grim symptoms of HF, teaching about lifestyle modifications, and encouraging scheduled follow up as patients were not interacting with them in routine except for some medication queries. Few patients in the present study told that they were being advised about lifestyle modifications at hospital visits but they failed to implement those at home as they had inadequate information about the disease. These findings were similar to the study conducted by Horowitz CR et al. saying that patients could not receive proper advice and preventive tools. Hence, were not able to act accordingly to avoid unplanned hospitalizations.¹⁸ It has proven through studies that the specialized educational interventions in the form of oral or written instructions help reduce worst outcomes of heart failure.¹⁹

The current study necessitates that the patients must be educated to manage their symptoms at home as it has been found in other similar studies.^20–23 Specialized HF nurses working in the community areas owe the best opportunities to explore the needs of patients and caregivers and, the ways by which sudden deterioration can be avoided. The findings of this study will be beneficial for constructing training modules for patients, their family caregivers, and health care providers. Specialized HF nurses can set up a ‘nurse-led heart failure clinic’ for telemonitoring and follow-up of heart failure patients on an OPD basis. Protocolized approach is implied for healthcare providers like doctors and nurses starting from the entry point of a patient in hospital till discharge. This study revealed that stable heart failure patients can be adequately seen by specialized HF nurses at out-patient clinics provide that the nurses are appropriately trained. Hence, the cardiologists will be able to dedicate more time to the patients requiring complex medical care.

It is concluded that the patients and their family caregivers were inadequately trained to manage the HF symptoms by themselves in their home care settings. Moreover, the lack of protocolized approach by healthcare providers in addition to other barriers, made the hospital management of heart failure more challenging. The study addressed the gaps in patient-centered research for improving the current health system. The individualized or group training sessions for patients and their family caregivers and formal in-service education for the nurses to manage heart failure patients independently or under the supervision of cardiologists can lower down the burden of large no. of HF visits or readmissions. Future research is warranted to know more about the measures to overcome the barriers and challenges faced by the stakeholders in managing such complex illness.

Supplemental Material

sj-pdf-1-icp-10.1177_2053434520982224 - Supplemental material for Exploring the opinion of stakeholders about self-care, home care and hospital management of heart failure patients: A qualitative study

Supplemental material, sj-pdf-1-icp-10.1177_2053434520982224 for Exploring the opinion of stakeholders about self-care, home care and hospital management of heart failure patients: A qualitative study by Bandna Kumari, Sukhpal Kaur, Monika Dutta, Parag Barwad and Ajay Bahl in International Journal of Care Coordination

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Bandna Kumari

Supplemental material

Supplemental material for this article is available online.

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