A qualitative evaluation of a home-based palliative care program utilizing community health workers in India
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/IJPC.IJPC_166_18
Source of Support: None, Conflict of Interest: None
Aim: In India, the need for rural palliative care is increasing with the rising number of people diagnosed with late-stage cancers. Rural areas also have a shortage of trained medical personnel to deliver palliative care. To address these needs, a home-based palliative care program using community health workers (CHWs) to facilitate care delivery was developed to extend the reach of a cancer center's palliative care services outside of Kolkata, India. The research question guiding this qualitative study was, how feasible, useful, and acceptable was this program from the perspectives of the clinical team and CHWs who delivered the intervention? Methods: This qualitative descriptive study used a grounded theory approach and the iterative constant comparative method to collect and analyze data from the key stakeholder interviews. Ten qualitative interviews took place at the Saroj Gupta Cancer Center and Research Institute and were conducted with the CHWs who delivered the home-based palliative care intervention (n = 3) and the clinical team who provided them with training, support, and supervision (n = 7). Results: Three major themes emerged (a) CHWs' desire and need for more training, (b) the need for tailoring of existing intervention protocols and modifying expectations of stakeholders, and (c) the need for considerations for ensuring program sustainability. Conclusions: The study provided evidence that the utilization of CHWs to facilitate delivery of palliative care is a feasible model worthy of consideration and further research testing in low-resource settings.
Keywords: Community health workers, India, less-developed countries, palliative care
What is already known about the topic?
What this paper adds
Implications for practice, theory or policy
Over one million new cancer cases occur annually in India, where over 80% of cancers are diagnosed as late stage., Often, the only possible patient care plan is pain and symptom management, given the reality of late-stage diagnosis in most patients. Outside of Kerala state, majority of the states in India lack evidence of providing palliative care., Most palliative and hospice care services are offered in large cities and regional cancer centers., Rural cancer patients are challenged in accessing palliative care due to poverty, lack of insurance, and transportation.,,, At the health system level, lack of health-care facilities and coordination of health-care services limit palliative care provision. Access is also limited at the societal level because of the underdeveloped health-care workforce, particularly in rural areas.,,,
Physicians and other types of providers such as nurse practitioners and registered nurses are scarce in rural India. For every 10,000 people living in rural areas, there is only one licensed, qualified physician. In such low-resource areas, community health workers (CHWs) may provide a workforce that could potentially help to fill the critical gap in health services.,,, CHWs are defined as “health workers who receive standardized training outside the formal nursing or medical curricula to deliver a range of basic health, promotional, educational, and outreach services and who have a defined role within the community system and larger health system.” A common, untrained CHW workforce in India is unlicensed rural medical practitioners (RMPs) that deliver health-care services in rural communities. RMPs do not have formal medical training but offer rural patients' basic health-care services for health problems such as pneumonia, diarrhea, and gynecological issues. Informal RMPs represent a well-established workforce that tends to be trusted in their communities.,,, Since this workforce is already providing basic care for colds, coughs, fevers, aches, and pains, it may be feasible to train and utilize this workforce to increase the reach of scarce palliative care services given the lack of trained providers in rural areas.
The research question guiding this qualitative study was, how feasible, useful, and acceptable was the piloted palliative care program from the perspective of the clinical team and CHWs who delivered the intervention?
Parent study: Home-based palliative care program
A small feasibility study was conducted to evaluate a home-based palliative care program that used RMPs as CHEs to facilitate delivery of palliative care for rural cancer patients outside of Kolkata, India. The purpose of this feasibility study was also assess the potential for future, broader scale testing, and implementation of the palliative care program. The program was a collaboration between the Saroj Gupta Cancer Center and Research Institute (SGCCRI) and the Medical University of South Carolina (MUSC). The pilot trial was a small, single-arm feasibility study. Materials from the Worldwide Palliative Care Alliance (WPCA) Palliative Care Toolkit (2008) were used to train the CHWs and provide patient management tools [Table 1]. After training, CHWs supported the clinical team in assessing and managing the diverse palliative care needs of rural cancer patients living in their communities, supervised by the SGCCRI clinical team. For 3 months, CHWs visited patients each week, using the palliative care toolkit to monitor patients' pain and other symptoms, provide basic palliative care such as medications and wound care, help teach family members to deliver care, and help patients contact their oncologist and other supportive resources when necessary, as well as document patient needs and services received.
Study overview and design
This qualitative descriptive study was conceptualized to characterize the perspectives of key stakeholders (clinical team and CHWs) regarding the successes and challenges of utilizing CHWs to help deliver home-based palliative care in a rural area surrounding Kolkata, India. A grounded theory approach that included inductive/deductive evidence was used to analyze the data. We began with existing evidence about the important domains in home-based palliative care and CHWs, which enabled us to compose neutral questions for the interview guides. Individual semi-structured interviews were conducted to evaluate stakeholder experiences with the program, focusing on evaluating program feasibility, acceptability, and usefulness. We used the iterative constant comparative method to collect and analyze data from the key stakeholder interviews. Themes were developed across all the data gathered until thematic saturation was reached. The MUSC's Institutional Review Board approved this qualitative interview study in June 2017, with written informed consent obtained from stakeholders before study participation.
Interviews took place at the SGCCRI in Kolkata, India. The SGCCRI was established in 1973 as a nonprofit organization and is a Designated Center of Integrated Oncology and Palliative care recognized by the European Society for Medical Oncology. The home-based palliative care program that is the focus of the current study was piloted in 2017 with SGCCRI patients who resided within the South 24 Parganas Region of Kolkata, India.
Two groups of stakeholders were recruited (1) the palliative care clinical team (physicians, nurses, behavioral counselor, and study coordinator) from SGCCRI that trained and supervised the CHWs and (2) the CHWs who facilitated delivery of palliative care to rural cancer patients. Of the six CHWs recruited, five completed training, and three of the five had patients in their village for whom they could help facilitate the delivery of palliative care. Of these three CHWs, two had degrees in homeopathic medicine and one had a certificate in paramedics. Ten persons participated in interviews, including all clinical team members who participated in the palliative care program (n = 7) and CHWs (n = 3) who helped to deliver palliative care during the program.
Data collection and management
The interviews were conducted during a 6-day period, and the total time for data collection and analysis was approximately 8 weeks. A demographic survey was administered to participants before their interviews to collect information about type of stakeholder, professional role, age, sex, language, religion, and education. The survey was translated into the local language, Bengali, by a professional translator.
Qualitative data were obtained through individual, semi-structured interviews to explore stakeholders' experiences with the program. A tailored interview guide that was translated by a professional translator was used for each stakeholder group. The guide included questions relevant across all stakeholder types and questions specific to each stakeholder group (i.e., clinical team members, CHWs). The multidimensional biopsychosocial model and the social ecological model (SEM) guided the inquiry, capturing the holistic nature of palliative care, including biological and medical concerns, psychosocial and practical concerns, as well as the social, institutional, and cultural contexts of the SEM.
[Table 2] provides an overview of the interview guide questions. Using these two models, questions addressed program feasibility, acceptability, and usefulness to stakeholders. The interview guides were written in English and professionally translated into Bengali. Interviews were conducted in a private location at SGCCRI and digitally recorded. The interpreter was a native Bengali speaker. The principal investigator asked the interview questions in English, and stakeholders answered questions in English or Bengali, depending on their preference. When answers were given in Bengali, the interpreter translated the answers for the team members so that appropriate probes could be asked. Handwritten field notes were also taken. After the interviews, audio recordings were compared to the handwritten notes with Bengali data re-examined for translation accuracy, and missing information was added. Interview guide questions were modified as needed after each interview for clarity and to enable follow-up and on topics identified during prior interviews.
A thematic analysis integrated with a deductive/inductive approach was used. An initial data codebook was created and then reviewed by a second investigator. As interviews were transcribed, they were analyzed using constant comparative methods to repeatedly compare existing data with new data and recode data as needed. Transcripts were coded initially by a single investigator to identify emerging themes and subthemes, with review by a second investigator to identify additional themes as needed, and all three investigators validated final themes. Key quotations associated with the identified themes were then coded. The total time for data collection and analysis was approximately 8 weeks.
[Table 3] describes the characteristics of the ten interviewed stakeholders. Clinical team members included four palliative care physicians, two palliative care nurses, and the study coordinator. Forty percent of stakeholders were aged 21–29 years, 30% were aged 30–49 years, and 30% aged 50 years or older. Most were male (70%) and Hindu (90%), with 40% holding graduate degrees, 40% bachelor degrees, and 20% diplomas or certificates.
Overall, CHWs were able to facilitate delivery of meaningful palliative care to patients and extend the reach of a cancer center's home-based palliative care program, providing evidence of the feasibility of the program. They developed positive relationships with patients and found the experience personally rewarding. They learned about diseases and symptoms from the training and wanted the program to continue. Three major themes concerning the feasibility, usefulness, and acceptability of the home-based palliative care program emerged (1) desire and need for more CHW training, (2) tailoring of existing intervention protocols and modifying expectations of stakeholders, and (3) considerations for program sustainability. The information gained from this evaluation study and the evidence it provided suggested that this palliative care program will be feasible to implement and assess on a broader scale.
Community health worker training protocol
Details of the CHW training protocol and curriculum are described in [Table 4]. The palliative care training included (1) a few days of informal shadowing the palliative care team for 4 h a day before the formal training and (2) a week-long formal training that included 3 h of shadowing and 4 h of didactic classroom training a day delivered collaboratively by SGCCRI and MUSC at the cancer center. The training was based on the Palliative Care Toolkit, a resource that offers evidence-based strategies to deliver home-based palliative care in low-resource areas.
Theme 1: Community health worker desire and need for more training
Theoretical and practical training
CHWs were eager to learn, attended all trainings, and wanted more training. One CHW stated: “Five days of didactic training is just not enough for this program. We also need more clinical shadowing experience.” During CHW training, didactic presentations were given for 5–6 h per day, and CHWs shadowed the clinical team for one or two cases per day, all of which took place after the CHWs had already cared for patients in their own practices. The CHWs reported that it would help to spend more time shadowing the clinical team to observe their palliative care practices. A common suggestion was that the overall training needed to be held over a longer duration, with shorter 3–4 h training sessions to allow time for integration of the materials and to manage training alongside their private practices.
Physicians were pleased with CHW engagement with training materials and wanted more training for CHWs. One physician described “at the end of the day, the CHWs must know how to identify and manage symptoms.” This physician also thought that the CHWs needed more experience with preterminal palliative care patients, as the reality was that the CHWs primarily saw patients who were very ill. Training over a month's time, he suggested, would provide CHWs the opportunity to see patients at different stages of illness. Continuing education is also important for CHWs “so that they are in the community doing the right thing” in their own practices and in the palliative care program. Based on input from CHWs and clinical team members, there was consensus on the need for more initial didactic and clinical shadowing-based training, for this content to be broken up into shorter periods per training to aid in knowledge retention and for continuing education and support.
Concept of palliative care
The CHWs found the concept of delivering palliative care somewhat challenging, as they were accustomed to delivering curative care in their communities. Several CHWs said they felt like they had taken good care of their palliative care patients by extending their lives a little longer. Although CHW training covered the difference between curative and palliative intent, some clinical team members felt the CHWs needed to learn to customize the care they provided to focus more on emotional and end-of-life needs. These findings suggest that to make the paradigm shift toward palliative care delivery, more initial training and continuing education for the CHWs may be needed.
CHWs felt positively about their ability to comfort patients and offer support. One CHW stated that since his patients were in the terminal stages of their illness, “physical problems were out of the way, and emotional support was what I was providing them.” Another CHW noted that the emotional issue his patients suffered from the most was fear of death: “when those questions were asked, I used to comfort the patient and family.” However, several of the clinical team members believed the CHWs needed to focus more on psychosocial care. When the palliative care training was developed, there were plans to include case studies to allow CHWs to practice delivery of emotional support, but the case studies were removed to reduce training length. This finding suggests that the CHWs would benefit from additional training and the use of case studies on emotional aspects of delivering palliative care.
Keeping patient records
As shown in [Table 1], 11 forms were used to maintain patient records, a number deemed by stakeholders to be too laborious. During the didactic training, two modules covered use of the forms and the importance of record keeping. Most forms were successfully filled out by CHWs, but data collection could be enhanced by ensuring that CHWs consistently recorded pain scores and completely documented services provided at every visit. CHWs suggested a maximum of two or three forms for record keeping to reduce administrative burden.
Training to teach family members
CHWs felt that they were intimately involved with families and wanted to teach family members how to care for the patient and keep the patient and his environment clean. Some clinical team members also said that CHWs needed to train families about the concept of palliative care, comfort versus curative intent. One doctor stated: “We need to educate the family to know that the CHW's injection is not going to save their family member; it is not palliative care.” This finding suggests that patients and family members needed more information about managing their medical condition, about the process of dying, and the concept of palliative care.
Theme 2: Need for clear protocols and expectations for stakeholders
Patient and community health worker expectations about the program
During the program, CHWs knew that the patients needed them and this was rewarding for the CHWs. One CHW said, “Because the patient was in so much pain, she needed me, and the family saw that if the doctor (the CHW) comes, her pain will be less. They valued my help.” Patients expected CHWs to respond when called, and CHWs, in turn, felt that they should be available 24 h a day based on how they ran their own practice. However, the home-based palliative care was not meant to be a 24-h service which caused patients' some frustration when they expected the CHWs to be there in the middle of the night. The findings illustrate the dedication of the CHWs for their patients and that these stakeholders need more training about the scope of the palliative care program.
Patient and community health workers expectations about emergencies
Patient and family expectations of CHWs were high, and CHWs were eager to help their patients. However, patients and families had trouble discerning what was an emergency and what was part of the patient's natural dying process. CHWs were called by patients at all hours, and only on visiting the patient could the CHW see that the situation was not an emergency. If an emergency occurred the CHW could not handle, he referred the patient to the cancer center. CHWs felt inadequately trained to manage some emergencies: “When we go to these patients' houses at the time of an emergency, (sometimes) we do not have training for that” and the family became frustrated. This was challenging for the CHWs. The findings suggest that the CHWs were eager for more training on handling emergency care for patients and that both CHWs and patients needed more education on what constituted an emergency and what to expect during the dying process.
Theme 3: Sustainability of the home-based palliative care program
Acceptability of community health workers
The CHWs were acceptable to the clinicians in their ability to provide basic care to patients, and the CHWs believed that they did so. The experience of CHWs in their own practice was seen as beneficial to the palliative care program. Despite the CHWs being unlicensed, they “already knew the basics of medical treatment,” according to a physician. The qualifications of two CHWs as homeopathic doctors and one with a diploma in paramedics meant that they had some training.
Since the CHWs were part of their community, they were familiar with patients' needs and were connected to local MDs, which was beneficial to the program. The clinicians agreed that CHWs could handle many of the patients' problems: through mobile phones, the CHW could discuss the state of the patient and work to meet the patient's needs with the guidance of the physicians. The CHWs also believed that they met the needs of their patients: “As long as I was in the house, I could see they used to feel relaxed and less stressed.” These findings confirm that the CHWs, while unlicensed RMPs, were perceived as being able to provide their patients with common supportive care.
Stakeholders in the program, including nurses, physicians, and the CHWs, proposed ideas on how to continue the program. Suggestions for financial backing included having the cancer center charge fees to patients to support the program, incorporating CHWs into the cancer center as associate employees, and asking local corporations or nongovernmental organizations to help subsidize the program costs. These suggestions illustrate the desire of the stakeholders for the program to be sustainable and potential models of sustainability that might work.
The overall perception of CHWs by clinicians was that given enough training and support, utilizing RMPs as CHWs would be an acceptable and ubiquitous workforce for facilitating delivery of palliative care to extend the reach of cancer centers and other health-care organizations in low-resource rural settings. The results of this small feasibility study suggest that this program is feasible to implement and evaluate on a larger scale.
When provided with proper training, it has been demonstrated that RMPs can serve in rural areas and thus decrease the gap in health-care providers.,, Successful programs using CHWs require ongoing training and education for the CHWs., Several models of training exist from rapid training to training that lasts over the years and concludes in a CHW certificate. The palliative care program we evaluated used a rapid training approach to bring CHWs into the program without a time lag between recruitment and deployment. We learned that a 5-day rapid didactic training for palliative care may not have been adequate for CHWs. In addition, case studies focusing on psychosocial care had been built into the training, but to accomplish classroom training within 5 days, the case studies were removed from the curriculum. We believe case studies that explore the emotional care of patients, and the holistic concept of palliative care is critical in training CHWs.
What this study adds
More intensive training, including didactic classes, shadowing of clinicians, case studies, and continuing education, would help to improve CHW skills in some key areas. These include (1) understanding the concept of palliative care and need for greater focus on emotional issues at the end of life and (2) distinguishing between what constitutes an emergency versus the natural dying process and conveying this information to patients and families.
Evidence supports the positive impact of CHWs as a care model in low-resource countries, but little is known about effective strategies for the growth and maintenance of CHW programs. The most frequently cited factors that enable scale-up and sustainability of CHW programs included consistent management and supervision of the CHWs and of the program, using CHWs from the community, and integrating CHWs and the program with the health-care system or health-care providers., In our palliative care program, CHWs were recruited from local communities and thus were familiar with their patients. In addition, by linking these CHWs to the cancer center and training them by physicians, we found that most stakeholders wanted the program to continue and were eager to contribute ideas for its sustainability.
The most frequently cited barriers to scale-up and sustainability of CHW programs in the literature include lack of sufficient pay or incentive for CHWs, lack of community support or perceived value of CHWs, and the lack of respect for CHWs or a failure to integrate into the structure of the health system., In our study, there was tremendous community support for the CHWs, and the CHWs were integrated into the health system. However, we did observe the potential for insufficient incentive for CHWs to continue working in the program once research funding had ended, as well as some lack of respect of the CHWs by the clinical team. Finding sustainable financial support for the CHWs and the overall program will be important to move the program forward. The evidence generated by this evaluation study indicates that this home-based palliative care program will be feasible to implement and further evaluate on a larger scale.
Study strengths and limitations
The main strength and limitation of this study was the limited sample size; although we had a small sample size, it did represent all clinical team members and CHWs who participated in the program. Another limitation was the absence of interviews with palliative care patients who participated in the program. Learning about patients' experiences in the program would offer additional insights into the development and sustainability of the program. However, interviews with patients were not possible due to practical considerations about getting the study approved in a timely manner.
The authors acknowledge the MUSC Center for Global Health grant that provided financial support for this research. The authors also thank the SGCCRI where this research was conducted, including the palliative care clinicians and CHWs who delivered the home-based palliative care intervention that we evaluated. Thanks also go to the research coordinator, Mrs. Nibedita Dinda, and the translator, Mr. Somanth Dey, who translated key documents for the study. The authors also recognize the key roles of Dr. Arnab Gupta, Director of the SGCCRI, Mr. Anjan Gupta, Secretary of the SGCCRI, and Dr. Rahul Roychowdhury, Head of Clinical Research.
Financial support and sponsorship
This research was funded by a pilot grant from the MUSC Center for Global Health.
Conflicts of interest
There are no conflicts of interest.
[Table 1], [Table 2], [Table 3], [Table 4]