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Table 2 Individual and Interpersonal Barriers

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

Factor Quote Barrier / Facilitator
Level of Education “I need my father-in-law to take me to the referral center because he is the only one in our family who speaks well and understands the doctor. My husband is not smart enough to take me and I cannot go alone.”
“My brothers went to school, but my parents did not send my sisters and I to school.”
“My father did not work and used to drink alcohol, so my older sister and I did not attend school. We had to take care of our younger siblings and help with housework. We also looked after the goats and took on small jobs around the village to earn money.”
“My siblings and I only attended school till fourth or fifth grade because we had to take care of the goats, work in the field, and help around the house.”
A lack of or low level of education was identified as a barrier to completing referral care. We observed that issues with literacy and communication hampered the beneficiary’s ability to travel independently, navigate the health facility, provide information to health staff, and comprehend medical explanations and advice.
A majority of participants were illiterate due to a lack of or minimal formal education for the following reasons: gender bias, child marriage, prioritization of work over school due to poverty or paternal absence, and negligence towards education.
Low Health Awareness “The ANM sister has told me I have anemia and that I need to go to the hospital to get medicine and a bottle (IV medicine). I have gone to the hospital once before when my stomach was hurting badly, but I did not go this time because I only experience dizziness sometimes. I am feeling okay.” Majority of women were identified as having low awareness about their health condition, associated symptoms, effects on maternal and newborn health at delivery, and treatment options. The decision to seek care is directly related to an ability to understand and weigh the risks and benefits of living with the health condition versus receiving medical treatment at the referral facility. Many women who did not complete their referral were aware of symptoms and treatment options, but almost all of them were unaware of possible delivery complications resulting from their high-risk conditions.
Low Health System Awareness “I have never been to the hospital, so I do not know what happens there. There is a bus stop near my house, but I do not know how to reach the hospital, so I did not go. My husband will come back from his labor work in Udaipur next month. I will wait for him to take me. I will not go alone.”
“I know the ambulance comes to our village. But when I went into labor, I did not know the ambulance phone number, so we chose to call a private jeep to take us to the hospital.”
Knowledge about preventative and referral care services, where and how to access them, and health staff familiarity provide ability and comfort in navigating the referral care process. For example, several women were not comfortable going to the referral care facility on their own due to lack of understanding the process and system. Many were also unaware of the ambulance phone number and specific government designated health service days, when the ASHA or ANM accompanies pregnant women from the village to the referral center for antenatal care.
Personal/Family Attitudes and Beliefs “The ANM comes and goes. She doesn’t care about me and my family like Dai Ma (local midwife) does. Dai Ma takes care of my children when I am busy and stays with me during my delivery and after.”
“What do you mean by ‘male sterilization’?! This cannot happen.”
“My husband cannot do the sterilization procedure because he will not be able to work if he does it. So, I will do it.”
“This is my fifth pregnancy… I wanted to have the sterilization surgery after my second child, but since my husband was the only boy amongst his siblings and we only have one son, my father in law wants us to keep trying until we have a second male child. So what could I do? I have to obey my elders.”
Several participants displayed personal and cultural beliefs that directly influenced their decision to seek referral care. For example, a few participants, despite high education and awareness, displayed negligence towards the ANM’s advice regarding referral care, and only visited the PHC when experiencing severe symptoms. Others avoided seeking referral care due to fear of the unknown or lack of trust in the government public health system. Some mothers from nomadic communities have more faith in local healers and midwives.
Often, decisions towards family planning are influenced by the beliefs and attitudes of paternal family members, e.g. husband, mother-in-law, and father-in-law. Several participants whose personal preferences lined up with those recommended by the ANM often were compelled to make contrary decisions based on their family’s wishes.
Lack of Access to Personal Transport “To get to the block hospital, my husband and I had to walk for 30 min just to get to the bus station. After a sonography, the doctor told us I needed to be given a bottle (IV Iron-Sucrose), but the journey and wait time was so long that it had become evening. We were worried about catching the bus to get back home so we left without treatment. So, the doctor gave us two IV bottles to take home. The next day, we had to travel to the ANM’s house, where she administered the medicine.”
“A month ago, I felt labor pains in the night and my husband used his mobile phone to call a private vehicle. However, by the time the car arrived an hour later, my baby had been born. My mother-in-law and husband were there during the process and helped cut the umbilical cord.”
Lack of access to personal transport, such as a motorbike or a car, was identified as a significant barrier for women living in areas with poor access to public transport. Many women reside in remote areas with difficult terrain located 1 to 5 km away from the nearest local bus stop, warranting 20 to 60-min walks. Few women lacked access to public transport, and had to cover the entire journey to the referral center on foot.
Since the majority of participants either lacked trust or knowledge regarding the ambulance system, access to personalized transport became especially relevant for labor and delivery. All participants who had home deliveries lacked personal modes of transport, whether owned or borrowed from neighbors.
Lack of Accompaniment to the Referral Visit “I understand that I am anemic and that my baby will be weak if I do not get treated. If I want to go to the hospital, I can take the autorickshaw, which stops right outside my house and my neighbors will watch my child while I am gone. But my husband works in Udaipur and there is nobody at home to take me to the hospital.” Many participants identified the main barrier to completing their referral care visits to lack of accompaniment during the process. Accompaniment involved not only assistance with transport and public health system navigation, but also emotional support. Since the primary occupation of families living in rural Udaipur is agriculture or labor, lack of accompaniment to the referral center emerged most for women whose husbands were migrant or day laborers in Udaipur city or other states. In several cases, participants directly attributed failure to complete their referral visit to their husbands being unavailable to take them to the facility. In these cases, participants either did not have family or neighbors willing to accompany them or preferred their husband’s accompaniment.
Household/Financial Responsibilities “Initially, I did not go to the referral facility because I had to plant tomatoes and take care of the goats. Then, my mother-in-law went to her parents’ house, so the workload at home and in the field increased even more. I had to wait 3 months for her to come back, so that my father-in-law and I could go to the referral facility.” Majority of women have household responsibilities such as cooking, cleaning, child care and walking long distances to acquire drinking water for the family. Additionally, many have financial responsibilities such as agriculture and animal husbandry. Because most women are not comfortable going to the referral facility on their own, often the process involves more than one family member neglecting their daily responsibilities. Many participants identified this issue as the reason for delays in their seeking referral care.