Abstract
Lay health workers (LHWs) are individuals who participate in a variety of health services, even though they have no formal professional training. They have been used in a variety of settings, especially where health care needs outstrip available human resources. Lesotho faces a severe human resource shortage as it attempts to manage its HIV pandemic, with more than 25% of the population infected with HIV. This article reports on a program that provided HIV services in seven rural clinics in Lesotho. LHWs played an important role in the provision of HIV services that ranged from translation, adherence counseling, voluntary counseling and testing (VCT) for HIV and patient triage, to medication distribution and laboratory specimen processing. Training the LHWs was part of the clinic physicians' responsibilities and thus required no additional funding beyond regular clinic operations. This lent sustainability to the training of the LHWs. This paper describes the recruitment, training, activities, and perceptions of the LHW work between June 2006 and December 2008. LHWs participated successfully in the care of thousands of people with HIV in Lesotho and their experience can serve as a model for other countries facing the disease.
Introduction
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One category of LHWs that have provided health care for people with HIV, particularly in Southern Africa, are individuals known as “expert patients.” 15 Although there are multiple definitions of expert patients in health care settings, 16,17 in the field of HIV, an “expert patient” is someone living with HIV who provides health services to other individuals who also have the disease. 18 LHWs have been successful in performing a range of activities, including counseling, patient assessments, and outreach. 19 There is, however, little documentation in the literature about the process by which LHWs and expert patients are selected and trained and that describes the work they do.
Lesotho is a country in southern Africa that is home to more than 2 million people and is facing one of the most serious HIV pandemics in the world. Currently, it is estimated that 25% of the general population are infected with HIV. 20 Current life expectancy in Lesotho is approximately 40 years. 21 Like many countries Southern Africa, Lesotho faces an extreme shortage of health care workers, with an estimated 60% of nursing posts vacant and fewer than 100 (0.5 physicians per 10,000 population) physicians working in the country. 22
Lesotho's HIV crisis is a general one, affecting urban and rural populations alike. The need for HIV treatment services is equally high in the rural areas as in the city. The rural areas, however, pose challenges for providing HIV services. Key among these is the lack of health care providers. Living in the rural regions of Lesotho is difficult, with no electricity and few paved roads. The logistical challenges of working in rural Lesotho make it unappealing for health providers, and a majority of rural clinics are either understaffed or not staffed at all. 23 In the face of increasing need for HIV services, this lack of personnel his has rendered the delivery of these services extremely difficult.
In 2006, a joint program involving The Ministry of Health and Social Welfare of Lesotho (MOHSW), the US-based NGO Partners In Health, The Division of Global Health Equity of Brigham and Women's Hospital, Boston, The Clinton HIV/AIDS Initiative, and Irish Aid called the Rural Health Initiative was launched. 24 The goal of this program was to increase access to HIV care and treatment in rural Lesotho. The program focused on seven mountain clinics located in among the most remote, mountainous areas of Lesotho. In contrast to clinics in the cities in Lesotho that were staffed with doctors and had HIV services in 2006, these mountain clinics did not have regular physician staffing or provide HIV services prior to the start of the rural initiative. As part of this initiative an intensive effort was made to introduce HIV care and treatment into settings of primary care. In order to do so, paid LHWs were recruited and trained as key personnel in the program. This article will describe the process by which the paid LHWs were recruited and trained, the types of work they did, and their perceptions of being LHWs.
Methods
Between June 2006 and December 2008, seven rural mountain clinics established HIV care as part of the Rural Health Initiative, and these seven clinics were the focus of this study. Qualitative methods were used to assess the process of program implementation, with a focus on the recruitment, training, and responsibilities of LHWs. These methods have been used in multiple health care studies and include participant observation and ethnographic interviewing. 25 Detailed field and interview notes were recorded by a trained anthropologist (J.F.) and analyzed for theme and content. A total of 30 paid LHWs participated in this study over the 30-month time period. They were observed working in the clinics on at least 10 occasions. A semistructured interview was administered to all 30 LHWs in which they were asked to describe their HIV-related clinical activities. They were also asked to comment on their perceptions of their work as LHWs. The starting salary for a LHW was 300 Maluti (equivalent of $40 USD) per month, which was set at a level to match the salary of the MOHSW pharmacy dispenser position; a position with requirements for a similar level of training.
Results
The Rural Health Initiative
As mentioned above, the Rural Health Initiative was started to improve access to HIV prevention and treatment services in settings of primary care in rural Lesotho. The clinics selected were located in the most remote mountain regions of Lesotho, accessible only by single-engine Cessna aircraft and they served a catchment of approximately 250,000 people. 26 In May 2006 there was no HIV testing or treatment available in these clinics. A pilot clinic was started in June 2006 and experiences there were used to guide further program enrollment. Clinics were started in a step-wise fashion, with one in 2006, three in 2007, and three in 2008. The program evolved and improved over time, using lessons learned from each prior clinic opened.
Given the remote locations of the clinics, there were no physicians available to staff them in early 2006, and district supervisory medical teams could not easily access them. The standard staff roster of these seven clinics was an onsite nurse or nursing assistant, one support staff member who operated the dispensary, an additional support staff member to help with cleaning and other errands, and a security guard.
When the Rural Health Initiative started in the first clinic in June 2006, it immediately increased staffing by providing one to two physicians onsite at all times. The first physicians to serve were from the United States and Haiti. Although English is an official language of Lesotho, the majority of people living in the rural areas speak only Sesotho. Thus, the physicians needed translation services and three translators living near the clinic were recruited. The high HIV prevalence in the rural areas quickly overwhelmed the program with patients. As described elsewhere, the provision of HIV testing and treatment services doubled the daily clinic visits, and the number of TB cases diagnosed increased by 10-fold. 27 In addition to the increased number of daily clinic visits, the acuity of problems among the HIV positive patients was also more severe because they had not had access to services previously. In order to manage the increased number of very sick patients, the translators underwent rapid training and quickly became responsible for a wide variety of health-related activities at the clinic. Thus, they became the first group of LHWs to be part of the program.
Since June 2006, the Rural Health Initiative sites have provided primary care services to hundreds of thousands of individuals. Between June 2006 and December 2008, 13,887 individuals underwent HIV testing through the program. The Rural Health Initiative enrolled 4521 patients in HIV care and started 2354 on treatment. More than 85% of patients started in treatment remained on therapy as of December 31, 2008. The program also recruited and trained 30 paid LHWs to provide health services at each of the seven clinics. Of the 30, 17 were male (56.7%) and 13 were female (43.3%). The median age was 28.8 years (range, 23–37 years). Of the 30 LHWs who took part in this work, 19 (63.3%) were HIV positive.
Recruitment of LHWs
A majority of the lay health workers were originally hired as translators (24/30; 80.0%). Translation was necessary while the outside physicians learned to speak Sesotho, and the clinic nurses—who all spoke English and Sesotho—were too overwhelmed with patient care activities to provide translation services for the physicians. In each of the seven clinics, the translators were recommended by the clinic nurse and interviewed by the nurse and physician. The first three translators recruited to the first clinic also happened to be HIV patients themselves. They had a higher level of education than most of the catchment population, and the three of them had experienced receiving HIV treatment themselves from a district hospital located 7 h away. One of them was heavily involved with an HIV activist group, and all of them were able to bring their personal experiences to bear on their work. Thus they were known as “expert patients.” When asked about his recruitment to the program, one of the first LHWs said:
I was so excited to hear about this project. I had struggled for months with my HIV, but I was lucky enough to be able to get care at [the district hospital]. I saw what was happening to my friends and neighbors who could not. I came to the clinic to ask [the nurse] if it were true that doctors and HIV medicine were coming to the clinic. She told me yes, and then she amazed me by asking if I wanted to help. I was so excited to think I could actually do something, so I said yes right away when she told me they would need people to translate. It changed my whole life.—L.S., 34-year-old LHW
In subsequent clinics, many of the recruited translators were not HIV positive themselves. Thus the term LHW was used instead of “expert patient.” As mentioned above, the LHWs were paid 300 Maluti (equivalent of $40 USD) per month.
Training of LHWs
Initially, the site physicians provided a majority of the training to the LHWs. At the first clinic, this was done in a more informal fashion. Each LHW had a training period that lasted 1 week before starting work. During this training week tasks were explained, forms and registers reviewed, and the clinic operations and flow explained in detail. A majority of the training was “on the job.” The first group was required to read and write at a high school level and to speak English. The English requirement was dropped for subsequent groups as more Basotho management staff and Basotho health professionals were hired. They were trained in medical terminology by the site physician and also provided important insight into culturally appropriate ways to ask certain questions. They all also underwent training in the importance of maintaining confidentiality. All of them signed confidentiality agreements with the clinic.
The physicians and LHWs would spend time prior to patient arrival reviewing forms, practicing Sesotho, and talking about clinical signs and symptoms of HIV. The clinic-based nurses also assisted with the training of the LHWs, although most of the work was done by the physicians. As one LHW noted:
I always think about our early mornings with [the doctor]. I tried to teach her Sesotho, and oh, was her accent so so bad. But we had fun trying. She would also teach me, words like “jaundice” or “neuropathy.” We felt like schoolchildren sometimes. But we learned a lot together.—T.T. 31-year-old LHW
Within the second month of treatment provision at the first clinic, a weekly “case conference” was established by the site physician. At these conferences, the entire staff—including the LHWs—would meet for an hour to talk about topics related to HIV. This was another way in which training was provided to the LHWs. During the roll out process, these case conferences were also introduced at the subsequent clinics and used as way to provide continuing medical education.
At each of the clinics, LWHs also requested more specific training. For example, some requested to learn how to check weights, temperatures, blood pressures, and respiratory rates. They were trained to do so by the clinic nurses and physicians and practiced on one another. Others requested training in the management of registries or the distribution of medications and were also provided with this by the physicians and nurses. Over time, a training curriculum was developed, using standard training materials. 28 The LHWs with more experience were then able to take over the training of new recruits.
Some of the LHWs requested training in order to provide HIV testing and counseling. A formal training program existed in Lesotho for LHWs to be certified and those LHWs in the Rural Health Initiative participated in the program. Over time, one of the LHWs became a certified trainer, and he was able to offer ongoing training to others interested in the topic. The same type of nationally certified training was also offered to those who were interested in adherence counseling.
It bears mentioning that a proportion of the LHWs requested and received training in more complicated medical tasks. One of these was triage. The waiting areas in the clinics were often very crowded, and patients would have to wait for several hours to see the physician or nurse. These physicians and nurses rarely had time to leave their exam rooms, and thus there was no system to triage very sick patients. LHWs were trained in basic triage in order to prioritize the sickest patients first. Some LHWs requested training in interpretation of chest radiographs, and a training session was created. Although the LHWs were never asked to formally interpret chest radiographs, they practiced this skill with the physicians, and it kept them engaged in ongoing learning. As one LHW noted:
“I always wanted to know what the doctors were seeing when they looked at that x-ray. It was black and white shadows to me. So I asked, and she showed me. It was amazing. We practice looking at some when we have time. She would never let me do it alone, but it is great when we do it together. We work so hard, and sometimes the work is so sad. Too many patients every day. But if someone wants to see you learn and help you learn, it makes you want to do a good job.—B.D., 23-year-old LHW
Over time, the more “informal” training offered to the first group of LHWs was formalized and standard activities, manuals, and cases were offered to subsequent groups of LHWs. The more formal training was done at each clinic and lasted for 4 weeks. In the morning didactic review of forms, responsibilities, and basic clinic activities occurred. Afternoons were used for on the job training. After 4 weeks, the LHWs were ready to assume independent roles. In addition to the weekly case conferences, a monthly weekend conference for all health workers (including village health workers) was held at each clinic. LHWs continued to request and receive training based on their areas of interest and needs. Training LWHs was an explicit role of the physicians, and became an explicit role of experienced LHWs, hence no dedicated funding was required for this process, beyond what had been made available for the Rural Health Initiative.
Responsibilities of LHWs
The LHWs participated in a range of activities, including translation, patient intake, assessment of vital signs, triage, voluntary counseling and testing (VCT), medication distribution, adherence counseling, maintaining registries, food distribution, laboratory sample processing, and home visits. Table 1 lists the frequencies with which lay health workers were observed participating in these tasks.
Thirty lay health workers were surveyed.
Maintining registries involved filling out and updating national pre-antiretroviral, antiretroviral, and tuberculosis registries for patients with HIV, tuberculosis, or HIV and tuberculosis coinfection.
VCT, voluntary counseling and testing.
A majority of these responsibilities were tasks that were previously carried out by physicians and nurses. In settings of health care worker shortages, such transfer of responsibilities came to be known as “task shifting.” 29 Task shifting has been defined as the delegation of tasks from higher qualified to lower qualified cadres. 30 Although recommendations for task shifting in response to the HIV epidemic existed at this time, 31 the process of task shifting in the Rural Health Initiative was not preplanned but rather occurred as a matter of practicality. It occurred to relieve the treating physicians of basic, but necessary responsibilities, and free their time to treat patients.
In addition to the specific health-related activities described above, the LHWs brought additional services to the Rural Health Initiative. It quickly became clear that Lesotho presented some unique challenges in community-based HIV management. Stigma of both the disease and the treatment in the community and among established clinic staff were issues. Some community leaders were skeptical that antiretroviral therapy (ART) would help patients, and some even cited examples of the therapy hastening patients' deaths. 32 The complications of migration to South Africa for work and maintaining treatment under these circumstances represented a different challenge. The distances and terrain also presented problems. The volume of HIV and tuberculosis (TB) in a rural setting was also challenging. These LHWs insights into these problems, and guidance in finding solutions revealed their value beyond just their new responsibilities. Their role in addressing practical obstacles and navigating the complexities of local perceptions of the Rural Health Initiative among patients, community, and local leaders was one of their most valuable roles. As one LHW noted:
It took a lot of talking and time to make people feel comfortable with the [foreign doctors]. No doctors had ever come to stay with us before. People were very suspicious. They thought they might be experimenting on them. But I knew the doctors and knew they meant to help. So I did a lot of talking, a lot of easing of the villagers, and now they see this is a good thing too.—G.L., 28-year-old LHW
The critical role of LHWs in educating physicians about the realities of living with HIV and their pressure to open access to care and treatment, and to fight social stigma and marginalization have been documented since the beginning of the epidemic in varied settings. 33,34 The LHWs who started the Rural Health Initiative also filled these roles and their engagement in this role, though unanticipated, was critical to the success of this Initiative. In addition to interpreting the situation of the patients relative to their communities and the challenges of poverty for the doctors, they also advocated for fair treatment from clinic staff, and committed themselves to the Rural Health Initiative as a movement for access for HIV. As one LHW noted:
We hear people talk about activism, AIDS activism, all the time. I never knew what they meant until I started working here. I do my activism each day, helping the clinic run, looking out for the sickest people, making sure they get food. I am very active about this AIDS now.—R.L., 32-year-old LHW
Once the LWHs saw that their particular insights were valued, they offered insights into all aspects of the clinic operations. They commented on the indignity of the inadequacy of clinic space and the lack of a proper examination room; arranged and managed community health worker trainings; they improved the process of counseling, registration and history and examination to improve patient flow; suggested methods and prioritizing patients for follow-up visits; insisted that adequate transport assistance be given for patients needing to travel to the district hospital for chest x-rays or c-sections; guided clinicians on home visits to patients too sick to walk; and organized mobile outreach clinics and village based screening. They also insisted that shelters be constructed at the clinics that would allow patients who travelled long distances to spend the night safely and comfortably at the clinic either prior to or after their appointments. Over time this interface built relationships with village chiefs and other community leaders. The Rural Health Initiative gained social assets among the communities for as a result of these strong relationships. As one LHW noted:
At first, I just thought I would be a translator. But then the doctor wanted to go visit a patient at home. The patient lived six hours away, so I got horses for us to ride. I was able to introduce the doctor to the local chief as well, so they knew what was going on. I packed and carried all the medicine, and once we got to the house, I knew to take the men away so the patient could have privacy. When the doctor said we needed to take the patient to the hospital, I found the truck to take us there and got food for her and her family for the long journey. Eh, I helped save that patient's life. I hate to think what would have happened if the doctor had tried to go alone.—R.L., 31-year-old LHW
LHWs' perceptions of their work
Interviews were done with all of the LHWs to assess their perceptions of their role as LHWs in the Rural Health Initiative. Of the 30 interviewed, 29 (96.7%) reported having an overall positive experience as a LHW. The one who reported a negative experience reported feeling that she was overwhelmed by the number of patients and how sick they were. She stated:
My sister has HIV. And I thought it would help to see people get better and learn what they are going through. But for me it is too hard. I see my sister in all their faces, and I just cannot do this anymore.—M.R. 29-year-old LHW
Her experience, however, was an outlier, and all other LHWs had positive things to say about their work. They were thankful for the new skills they had learned and for the impact they were able to have on other's lives. As one noted:
This has been the best job of my life. I have learned so much. And I have taught others to do even more. My family is proud of me and I am sending my children to school. Maybe one day I will also go back to school. Become a nurse, or a doctor too. We work hard, but I am very happy in this work.—R.S., 25-year-old LHW
For those with HIV themselves, a majority (15/19; 78.9%) also reported an improvement in their health status. They largely attributed this to their increased knowledge of HIV. Some, however, pointed to their relationships with physicians and nurses and knowledge of the medical system as improving their health. As one stated:
I am much healthier now than I was before. I know what to do if I have side effects from my medicine. I know when I should worry about a rash or a fever. But mostly, if I need help, I see the doctor every day. So I am not afraid to ask, hey, what is going on with me. If I had to go to [the district hospital] I would have to be really sick to go there. But now the doctor and I work together, so if I am worried about something, I can just ask her!—P.L., 34-year-old LHW
Of the 30 LWHs interviewed, 23 (76.7%) reported feeling overwhelmed at times. They noted this to be more a factor of the high number of sick patients they were seeing rather than a lack of support from the nurses and physicians. As one noted:
This work can be so very hard at times. There are days when I am just running, just barely alright. On some days I say, I am not coming back tomorrow. Especially days that something bad happens, or we do not get finished until 8 or 9 at night. But I always do come back. We are a team you see. I could not work without the doctor or the nurse. But neither can they work without me. Together, we all do our level best to keep people healthy and to keep them alive.—M.M., 27-year-old LHW.
Discussion
The experience of LHWs in the Rural Health Initiative shows how such individuals can be incorporated into national plans for improving access to HIV prevention and care services. Over a 30-month period, 30 LHWs were recruited and trained and provided a variety of health related services to people with HIV. These included translation, intake, assessment of vital signs, triage, home visits, adherence counseling, and assistance with pharmacy and laboratory management. Furthermore, the LHWs also provided invaluable services that helped integrate the Rural Health Initiative into the community they served and to educate the physicians and nurses on the needs of HIV patients in Lesotho.
Many of the LHWs were recruited as translators and initially received informal, clinic-based training. As the program grew and expanded, however, more formal training procedures were followed using standard curricula and national norms. Training—at first done primarily by the clinic physicians—was also done by more senior LHWs as newer ones were recruited into the program. All LHWs were paid a salary of 300 maluti ($40 USD) per month for their work. They reported positive overall experiences with their work.
The LWHs potentiated the roles of the limited number doctors and nurses and other health professionals such as pharmacists and laboratory technicians. Given observed and projected economic limitations to achieving adequate health professional staffing exacerbated by the AIDS epidemic, 35,36 the LHWs provide an approach to help address the health worker gap in poor, rural settings. 37 Although not a replacement for nurses and other professionals, we found that LHWs extended the reach of clinic professional staff and were a relatively rapid and economical solution to staffing shortages. Since LHWs are local staff, they do not require housing at the remote, rural health facilities. In addition, to their potential economic advantage, they may also be less likely to migrate from areas of greater need than health professionals. Over the 30-month study period only three LWHs (10%) dropped out of the program citing personal reasons.
Although, anecdotally, patients reported overall satisfaction with the LHWs commenting on their knowledge, fairness, and kindness, and no formal complaints were made about the LHWs, patient satisfaction, an important consideration, was not formally studied as part of this project.
The Rural Health Initiative did encounter problems with the use of LHWs. Chief among these were the fact that there were no standard certification procedures for LHWs in the country. This hindered the process of integrating LHWs into the health system. At times, the relationships with some health center staff employed by the government were strained. Although the Rural Health Initiative had broad support from the MOHSW, the expert patients had no formal government support at the start of this project. This further marginalized them in the eyes of some health center staff. Although the Rural Health Initiative quickly experienced a very heavy workload, the task shifting in response to need meant that some responsibilities were vague or overlapping, and were less efficient that those roles would have been if they were an explicit policy. There were also tasks the appropriateness of which for sifting to the expert patients was disagreed upon among the doctors and MOHSW officials. Notably, the provision of VCT services was seen as outside the purview of LHWs until they underwent training through the national program. Over time, the LHWs were more accepted as valued personnel into the clinic structure and function.
Another problem was the lack of official recognition of LHWs as a cadre of professionals in Lesotho. Although the Rural Health Initiative gave certificates to all its LHWs, these were not recognized by the government nor could they be used to apply for work in clinics outside of the Rural Health Initiative. This meant that the LHWs had few options in terms of their job opportunities. Two other NGOs in the country were utilizing LWHs, and several meetings were held to establish nationally recognized criteria and certification for individuals engaged in their work. The process, however, was never completed, and as of December 2008 LHWs were not an officially recognized class of health professionals in Lesotho. This lack of recognition leaves them vulnerable as a group, and there is a real chance that their unique skills and experiences could be lost over time if national certification is not established.
Finally, the importance of training, monitoring and supervisions for LHWs assuming tasks in health care facilities is crucial to longer term success of their work. 38,39 The continued presence, constant interaction, and frequent consultation of the doctors with the LHWs functioned as a form of ongoing training and provided frequent supervision and monitoring of their work. The expert patients were also encouraged to ask questions and to offer suggestions. Creating a comfortable environment with open communication and information sharing allowed for us to resolve questions and difficulties and efficient integration of the expert patients into the work of the clinic. The modeling of respect and valuing for these lay workers contributions by the doctors helped lead to the eventual acceptance of their roles by all clinic staff. The remuneration of staff and clear definition of limited roles were also important components of the roles of the expert patients. Both these factors have been identified as important to allow effective participation of lay workers in health systems. 40
This study has several limitations. First, it was done in seven clinics in rural Lesotho and may not be generalized to other populations. Second, the data were collected over a significant time period in which there may have been historical events that influenced future events (i.e., the success of one clinic may have prompted hiring and training changes at another. Finally, this study took place in a small population (30 lay health workers) and additional research with larger study populations is needed.
The success of LHWs in the Rural Health Initiative clinics can serve as a model for scaling up HIV care in other settings in which there are limited human resources. Although the data reported in this paper comes from qualitative work with a limited number of LHWs, it demonstrates the many varied tasks that LHWs can successfully undertake. With proper training and support, LHWs can not only provide valuable services to persons with HIV and the physicians and nurses taking care of them, but they can also see improvements in their own health and gain a valuable set of skills. There are not enough physicians and nurses to take care of the millions of people living with HIV today, especially in places like Lesotho. The use of skilled LHWs offers hope to those infected with HIV, providing a method for delivering quality care even in the most remote regions of the world.
Footnotes
Acknowledgments
The authors would like to thank the Clinton HIV/AIDS initiative, Partners In Health, The Harvard School of Public Health, Irish Aid, The Lesotho Ministry of Health and Social Welfare and The Division of Global Health Equity at Brigham and Women's Hospital for their support. We would also like to thank Mphu Rahamatlang, Joy Sun, Salmaan Keshavjee, Jacqueline Chai, Bob Hsiung, Cheryl Snyder, KJ Seung, and Hind Satti, The Mission Aviation Fellowship and the people of the staff and communities of the clinics included in this study.
Author Disclosure Statement
No competing financial interests exist.
