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Table 4 Community and Structural Barriers

From: Referral care for high-risk pregnant women in rural Rajasthan, India: a qualitative analysis of barriers and facilitators

Poor Access to Public Transport “It takes one hour to walk to the closest primary health center. There is no bus or auto which can take me there and my husband is too busy with work to take me on our family motorcycle.”
“I usually go to the primary health center by bus. It is a long and tiring journey because I have to walk for 30–40 min to reach the bus stop.”
Some participants experienced significant delays in the referral process because public transport was not accessible. The government bus routes only operate from Udaipur City to the local block hubs and are effectively unserviceable to families traveling from local villages to the primary health center. Therefore, referral visits can only be completed through arrangement of a personal vehicle, privately operated buses or auto-rickshaws, and the public ambulance.
Additionally, public infrastructure (e.g. roads or dirt tracks), is not always present, preventing access to buses, auto-rickshaws and ambulances. In some areas, despite the presence of roads, participants still have to cover 3—4 km on foot to reach the nearest, privately operated, bus stop. Some participants living in geographically isolated areas reported a complete lack of access to transport. Without access to personal transport vehicles, the majority of these pregnant women could only reach the primary health center by walking for 45 to 60 min.
This lengthy journey can take all day resulting in the woman arriving home by late evening. Pregnant women find it difficult to accomplish the journey alone due to safety reasons, exhaustion, financial or household responsibilities, child care, lack of education/awareness, and lack of a mobile phone for communication.
Poor Service at Primary Health Center “I have gone to the block hospital two times for my anemia. Both times, I walked by myself for one hour to reach the bus station. After which, the bus journey takes around thirty minutes. At the hospital I waited two hours before the doctor could see me. The first time I went, I was given medicine. The second time, I was told to return back home because the doctor was not available. Since then, I have not gone back to the hospital.”
“The ANM sister referred me to the block hospital for my anemia. So, I went to the hospital to pick up my iron tablets. But at the hospital the doctor didn't give me any supplements. He told me I needed to get a sonography done at a private clinic, and that he would only give me the tablets once I had returned with the sonography. I wanted to do my sonography, but my mother in law fell ill for a few months and I had to take on extra responsibilities at home. I have missed my last few referrals because I still haven't got my sonography done.”
At the referral facilities, the two significant barriers experienced by some of the participants were the unavailability/absence of doctors and insufficient medical aid provided.
Many of the participants were deterred from completing their subsequent referrals due to negative experiences at the PHC. When doctors were not present at the facility, participants were either treated by a nurse, or were asked to come back on a later date. For those couples that travel long distances and sacrifice their household/financial responsibilities in order to complete their referrals, being asked to return the next day presents a significant burden
In some cases, failure to provide the necessary medications as well as poor bedside manner by PHC medical professionals can also act as deterrents to future referrals. In one such rare case, the doctor at the PHC withheld the required medications until the patient completed specific referral procedures at private clinics.
Lack of ASHA support “The ASHA does not visit any of the houses in our village or accompany us to the referral center. She doesn't even call or visit to remind us to go to the referral center or the Anganwadi for our antenatal care visits.”
“I am of the Gameti caste, which is a backward caste in my village. That is why the ASHA does not visit my house.”
“My baby was delivered at home one month ago without any help from the ASHA or Dai Ma (SBA). The ASHA or ANM have not come to visit me or my child yet, so my child has not been vaccinated.”
One of the primary responsibilities of the village ASHA is to ensure that pregnant women complete their referral visits, either through a household visit/phone call reminder or by accompanying the women to the referral facility as a travel companion and patient care navigator. The ASHA must also ensure women are aware of and have access to reliable modes of transport to reach the hospital for an institutional delivery. If a woman prefers to have a home delivery, the ASHA must ensure that a skilled birth attendant (SBA) is present. After the child is born, the ASHA must visit the household seven times during the first 42 days to identify infant danger signs as part of the government ‘Home Based Neonatal Care’ (HBNC) program.
A majority of the participants stated that ASHA neither reminded them to go to the referral facility nor accompanied them. Almost all of the participants who had children under the age of 5 stated that the ASHA did not visit their new born child for HBNC visits. Our experience has shown us that ASHA’s perform poorly primarily due to excessive workload or negligence. There are some villages where the culture of caste discrimination affects delivery of health services as well.
Geographic Isolation “I have had six deliveries of which five have been home deliveries. I was initially scared of going to the block hospital, but after going once I realized it was alright. For my most recent delivery I was planning on going to the hospital, but I went into labor in the middle of the night and I was alone. So, I delivered my child on my own and used an old blade to cut the umbilical cord.” In few cases the homes of participants were located in geographically isolated areas, separated from nearby villages by a few kilometers. The women living in these areas primarily experience barriers to transport as they have to walk significant distances, of 2 -5 km, in order to access public roads and public transport. The inaccessibility of these locations often results in a high rate of home deliveries, sometimes without any assistance. Additionally, without many neighbours, the participants that lived in isolated areas lacked basic awareness of the health system as well as the social support required to seek out and complete referral care.
Lack of Community Peer Groups “I do not know of any community meetings for pregnant women in the village. I do meet other pregnant women at the Anganwadi center when I go to receive my antenatal care services at the monthly health camp. But there is no community discussion that happens on the camp day.”
“I know there are Samuhas (self-help groups) in my village but I do not attend because I don’t know much about it and I don’t have time.”
“I used to attend the Samuhs in my village but they were discontinued because not many women joined. I talked to my husband and my friends about my pregnancy, but the discussions at the Samoh were mostly about money.”
Several government programs such as Village Health and Sanitation Committee, Village Health and Nutrition Camp, and Adolescent Health include a provision for community meetings for women within reproductive age to promote peer learning.
However, most participants stated that they were not aware of any community spaces designated for them to gather with other pregnant women to talk, either freely or through a facilitated discussion with a government health worker.
Many participants were aware of Self-Help Groups (Samuh) aimed to improve financial literacy and independence among women. Although these groups could also serve as spaces for women from marginalized communities to socialize or discuss reproductive and child health issues, most participants did not attend or stated that the discussions were usually only related to finances.
Lack of Confidence in the Ambulance System: “I did not call the ambulance because I went into labor in the night. We thought the ambulance does not come at night so we called a private jeep, but by the time it had arrived, the baby had already been born at home.”
“When I went into labor, we called the ambulance. They said they were coming, they said they were coming! We waited for a while, but when the ambulance did not come, we hired a local jeep for Rs. 600 to go to the hospital… It is expensive for us, but what else could we have done?”
The barriers associated with the ambulance system was a general lack of knowledge or trust.
Families were aware of financial incentives associated with institutional delivery but did not know how to call the ambulance, doubted its reliability, or held misconceptions that it is not functional at night. All participants, except one, did not use the ambulance to reach the hospital for delivery. These participants paid high prices to rent a private vehicle at the time of labor, borrowed a neighbor’s vehicle or delivered at home.
Lastly, there were rare cases of ambulances not making it to the participant's homes in time.
Lack of Access to Referral Documentation “I am in my 6th month of pregnancy, but the ANM sister has not yet given me my Mamta Card. She writes in it and keeps it with her at the Anganwadi center. She has told me to go to the referral center but I have not gone because I need to show my MAMTA Card there. I am scared that if I do not show it, I will be sent back home without treatment. Next month when I go to the health camp, I will get the MAMTA card from the ANM sister. After that I will go for my referral treatment.” The Mamta Card is a paper based health card provided to beneficiaries to track their journey during pregnancy, delivery and early childhood development and immunization. The Mamta Card serves as documentation during the referral process to ensure informed care at every level. It is also used as evidence of successful care completion, which is later linked to financial incentives for health workers and beneficiaries. However, it is often not filled out, because the ANM lacks the time to fill both the Mamta Card and her paper register during the health camps.
Many participants mentioned that the ANM keeps the Mamta Card with her until the last month of pregnancy. The ANM keeps the Mamta Card to fill out after the health camp is over when she has time. She also keeps it to ensure the beneficiary does not lose it as it holds important information linked to incentives. This has left beneficiaries without the resources to 1) understand their health status and pregnancy timeline and 2) present their medical history at the referral center.