Women in Nepal have become promising agents of change, improving control of type 2 diabetes and social trust. Now, a scale-up to rural areas is expanding the role of female community health volunteers in strengthening a vulnerable health system.
27 June 2024 Andreea Enea
'Am I empowering myself, or am I losing myself?'
Debaka Tiwari (pictured below) often asked herself this question in the beginning. 24 years ago, a married woman with a small child to take care of, Debaka had just moved into the Rajako Chautara neighbourhood (Pokhara Metropolitan Ward no. 32), when she was selected to train as a female community health volunteer (FCHV).
In Nepal, having an education and being married provides a certain social status to women, as well as opportunities.
One is becoming a FCHV.
These women represent a well-established and highly respected cadre of community health workers, a system that has been active for decades in Nepal. They are selected by a committee of local women in each ward (Nepal’s lowest administrative unit) to both enhance the health status of the community people and to empower women in the society.
'This neighbourhood did not have many educated women, so the municipality wanted me to train as an FCHV', she remembers.
Back then, there were no vehicles, roads or health facilities nearby as they are now. 'It really hurt me back then [to train far from home], but I have come so far'.
Debaka was already interested in becoming an FCHV; after going through an abortion a few years before, she wanted to support maternal health and safe deliveries if she could.
'I also wanted to learn so I can have a safe pregnancy', she adds. Today, her son is married and lives in Kathmandu, and her decades-long work as a FCHV has helped safeguard the health of many.
Through a pilot funded by WDF in the Gandaki Province, Diabetes prevention and management by lay workers in Nepal (WDF16-1441), Debaka has helped identify 22 people with diabetes in her community and monitors and supports many more to self-manage their condition.
. . .
Although the pilot ended in 2022, it has been five years since WDF’s last visit to Nepal; pandemic restrictions and difficult road access made it difficult to travel. And while it may be a unique experience, navigating deep valleys, towering peaks, and incredibly steep mountains is no easy endeavour.
However, this spring, WDF’s programme manager Marianne Kjærtinge Faarbæk was able to travel to Nepal and meet the local stakeholders: our partners, provincial and federal health authorities, FCHVs like Debaka, and community members living with diabetes.
It was an opportunity to see encouraging results: the FCHVs and health staff trained under the pilot continue to provide diabetes and hypertension screening and management and lifestyle counselling, even after the pilot's completion two years ago.
‘These services have moved closer to the communities they serve and have had a profound effect on the quality of life of people living with diabetes and hypertension’, remarks Marianne.
Moreover, a second project phase, Community-based diabetes and hypertension prevention and care (WDF20-1780), began this spring. While the pilot covered urban and semi-urban areas of the Gandaki province, the scale-up is expanding to rural areas.
According to a recent government study, 20% of the Nepali population lives below the poverty line. The poverty rate has remained high due to the numerous changes in the past ten years, from political instability, prolonged electricity supply issues and earthquakes to facing the COVID pandemic.
Equally important, with a new constitution and federalisation process, Nepal's healthcare has been decentralised to improve the delivery of and access to basic health services: the government handles policy, regulatory frameworks, and specialised healthcare, while municipalities manage primary care. Despite making healthcare more equitable and locally responsive, the process struggles with infrastructure, staff shortages, and procurement delays. Additionally, not all municipalities are covered by the government insurance scheme.
A major component of the new scale-up aims to support this process by extending screening and management services, including nutrition and healthy lifestyle counselling, to the local level, ensuring linkages to primary care facilities as well as advanced care for people with diabetes, hypertension and related non-communicable diseases (NCDs).
This approach strengthens a highly underfunded health system by leveraging existing resources, and it has proved successful for the infectious diseases and maternal and child health areas – and now, for NCDs as well.
Mobilising the FCHVs for NCD prevention and management ensures basic health service delivery to people’s doorsteps, making them aware of their health status and empowered to adopt a healthier living and practice self-care.
Both the pilot and the new phase funded by WDF bring screening, monitoring, referral, counselling services and treatment support closer to people in Nepal to strengthen primary care capacity and referral linkages and improve their health literacy skills.
Both projects are implemented by our local partner the Nepal Development Society (NeDS), a leading multi-disciplinary research and development non-governmental organisation. During implementation, NeDS has fostered a strong collaboration with Gandaki’s Provincial Health Directorate, which expressed a strong desire to expand the model to remaining wards, as well as a commitment to integrate NCD prevention, control, and care into all government community-based initiatives in the province.
The project was the only source of data in the province, and it was able to demonstrate a critical need and a potential solution.
Health authorities aim to integrate the NCD module into the basic FCHV training curriculum, which offers great potential for ensuring continuous capacity for integrated management of NCDs at the community level at a larger scale.
This would happen in parallel with the rollout of the training of the health staff of the province’s primary clinics in the World Health Organisation’s package of essential non-communicable (PEN) disease interventions for primary care. During the pilot project, NeDS has trained health professionals in the PEN package and will continue to do so in this second phase.
During the pilot, 168 FCHVs – more than the expected number – received in-depth training and supportive supervision to deliver integrated diabetes and hypertension services in their communities. The training was provided in behaviour change, food habits, exercise, the use of medicines, counselling, risk assessment and screening.
FCHVs took overall responsibility for screening, monitoring, referral, recording and reporting. Their efforts helped screen over 12,000 people, with more than half identified as being at risk of having diabetes.
'There are expectations. We have to work hard, we have to search for the homes in our village', 53-year-old Debaka explains. She works two weeks a month as a FCHV, monitoring 150 households.
'I have to go to each house, check the data and report to the municipality and the health post I am assigned to'.
This means she has to screen and monitor over 300 people for blood pressure and blood glucose every three months. But through the training, Debaka was able to find out she, too has diabetes. This prompted big changes in her life and advocating for healthier living.
For the community, she provided an accessible service. There is no public transport to the hospital in Shishuwa, where now people go only for complications that cannot be managed locally.
'Sometimes people come to my house to get their blood pressure checked, even at night-time when I am asleep. I open and check it', Debaka says in a soft voice. There an honest sense of pride behind it.
Fortunately, her husband is very supportive. ‘When people come here for check-ups, he measures their weight and height and writes them down while I measure the blood pressure and blood sugar.’
Up until the project started in 2017, FCHVs had only been trained in maternal, neonatal and child health. Adding tasks had potential financial implications, however, it brought them more respect and authority in their communities, as they also cater to men now.
'Before, I would only deal with women and children, not now, all age groups are involved and it is gender-balanced, so I feel more respected', Debaka explains.
However little is known about the experiences of community health workers in navigating such complex sociocultural contexts.
To fill this gap, two Copenhagen School of Global Health master students conducted a study on FCHVs' experiences during the type 2 diabetes pilot intervention funded by WDF.
Building social trust in their communities proved to be a significant challenge, according to a research article based on their study. The FCHVs managed to overcome it through perseverance, self-motivation, and by leveraging their bonding and linking social capital.
Men proved to be more sceptical and reluctant towards their skills and role as diabetes service providers. Initial mistrust led to some people not welcoming the FCHVs into their houses, however in later phases they started to seek medical advice from FCHVs for any health issues and spread information in their own networks.
This rings true for Debaka. Now, her family and everyone in her area listen to her advice. 'I feel it is my responsibility to give back to society. I happily want to continue.', she says.
The other FCHVs share similar experiences. They feel a great sense of pride and responsibility due to their social status. They feel happy and grateful to have the chance to save people’s lives and to have the strong support of their families and NeDS. Thanks to their work, there is a high awareness in their communities and an increasing demand for NCD screening and monitoring. While people with diabetes and hypertension are now managed at the community and primary care levels, instead of the hospital.
In navigating the challenges of their work, these aspects serve as strong motivation, making their experiences as FCHVs a key aspect to consider in future interventions, as the study suggests. It also found that the pilot was well-received when accompanied by awareness raising and supervision from health authorities and NeDS.
Full findings here: Female community health volunteers’ experience in navigating social context while providing basic diabetes services in Western Nepal.
'The FCHVs bring pride to themselves and their families. It is impresive to see that despite limited education they know so much about health and are so good at communicating with people. They want more training and understanding of NCDs to continue to take care of the population', shares NeDS’ physician Nasatya Khadka, during our visit.
'They can be a significant asset to our country, which faces challenges in providing diverse health facilities and providers geographically. Promoting them with more incentives and training is essential.'
The FCHV-delivered model has been extensively explored in terms of how it can help inform programmes in a global health context. The findings can act as an 'interface' creating evidence for policymakers, programme managers and community leaders.
'We approach diabetes from the perspective that most chronic care takes place in the homes and communities of people living with diabetes and hypertension, but frequent interactions with the health system are needed', explains WDF’s programme manager Marianne.
'This is a major constraint for many people who would have to travel far to see a doctor. Many will simply not go or not take their medications. Therefore, bringing services closer to people through the task-shifting approach becomes crucial. '
Although this approach has proven to be effective in service delivery and cost-effectiveness, especially in low-resource settings, its impact on primary care has been unclear, research says. To provide more evidence of the project’s feasibility and impact, NeDS has supported pioneering research efforts during the pilot, with key insights.
Findings of a clinical trial on the effectiveness of the FCHV-delivered intervention show how valuable community health workers are in improving public health outcomes in Nepal. There has been a significant reduction in blood pressure and blood sugar in the target population at 12 months follow-up during the pilot, plus increased adherence.
In terms of lifestyle changes, the results of a WDF baseline vs endline study captured a slight decrease in alcohol consumption, with a quarter of the participants quitting alcohol. There has been an increase in daily consumption of fruits and vegetables and physical activity.
Overall, participants showed improved behaviours and rates of awareness, treatment and control of type 2 diabetes and hypertension, most probably due to the regular monitoring and health counselling from FCHVs.
This research indicates that type 2 diabetes can be prevented and controlled with proper community-based programmes. Inspired by the findings, at least two municipalities have adopted and implemented the model, and others are preparing to do the same, supporting the expansion of the FCHV-delivered NCD intervention in Nepal.
Local health authorities in Gandaki asked NeDS to support the roll-out of the World Health Organisation’s package of essential NCD interventions (PEN) and help link community and primary health services in the province, as part of the pilot.
The project played a crucial role in bridging a gap in PEN coverage. It brought services closer to communities, forging strong connections with primary facilities and referral hospitals.
Despite challenges, it led to increased awareness, diagnosis, and data accessibility, strengthened the care cascade, and prioritised NCDs within local government. The model enhanced the role of schools and communities, empowering over 7,000 children with knowledge about healthy living, NCDs, and mental health. Type 2 diabetes awareness efforts reached over 100,000 people.
Consider a health facility in Ward 31 that serves around 60 patients with diabetes and many more with hypertension. Before the health staff's training under the pilot, cases were directly treated at distant hospitals. Now, the clinic provides integrated diabetes and hypertension management, nutritional, lifestyle, and mental health counselling, and referrals.
'The health staff at the primary care level echo the female health volunteers’ experiences: two years after the pilot ended, they continue to provide services and express a high degree of professional satisfaction in being able to cater to a growing number of people with diabetes and hypertension', shares our programme manager Marianne.
The scale-up started in March 2024 comes at a crucial time, when local authorities and the Ministry of Health and Population show overwhelming support. The Provincial Health Directorate and District Health Office will oversee coordination and training, while rural municipalities will lead the FCHV mobilisation. The model will be expanded in the whole Pokhara Metropolitan City via the Johns Hopkins Bloomberg School of Public Health, with funding support from the National Institute of Health.
In the face of challenges such as FCHV retirements and a shortage of essential consumables, the new phase of the FCHV-delivered intervention model aims to enhance capacity, strengthen care, and improve the information and supply system. With plans to roll out community-based NCD services and awareness initiatives, this model shows promise as a viable solution for Nepal.
During our visit, many people living with diabetes mentioned that the doctors do not have time to talk and explain things properly, as they have to see a high influx of patients every day. As a result, people have appreciated having someone to rely on in their community, someone who can give them advice and support.
Someone like Debaka who, reflecting on her experience, shares:
'I am proud that I am treated as a doctor in my community'.