3.1. Study population
A total of 13 caregivers of 10 patients were interviewed (Table 1). Children were aged between one and 14 years old. Some interviews were attended by a single parent, mostly mothers, or both parents. Some patients were diagnosed with Tetralogy of Fallot, atrial septal defects (ASD), and ventricular septal defect (VSD). Many had multiple diagnoses. A complete list of diagnoses and procedures performed can be found in Supplementary Material 1.
3.2. Identification of candidacy
Some caregivers mentioned that they learned about their child’s CHD right after newborn screening tests. However, if the child was not diagnosed soon after birth, caregivers could not recall if any screening was done. Also, not all children were born in a health facility. We examined that many misdiagnosed cases were correctly diagnosed after three to five, sometimes ten years. For those who did not find out right after birth, caregivers described how they came to recognize the symptoms of CHD including but not limited to fever, cough, shortness of breath, and vomiting. However, children with mild symptoms were thought to have a cold, and some parents did not perceive it as requiring formal medical assistance. Since some symptoms of CHD resemble a cold or flu, in many cases, children did not receive care for more than 5 years. Recurring symptoms prompted caregivers to seek formal health care. All of those who had home births noticed the symptoms but did not recognize them as CHD.
“[He] was sick 4 years ago, but at that time, I didn’t know if his heart was sick. He was taking another medicine at the time.” (Father 3).
Caregivers recalled during the interview that their children did seem a bit “strange” when they were babies and related past intense crying and screaming as additional signs of CHD.
“[Before the diagnosis], she screamed and cried a lot, and had a lot of fever … since birth.” (Father 5)
“[She] sweated a lot and she had shortness of breath as if she had a cold. She was sick since she was born, but when she got a cold, I took her to the hospital and she was prescribed with another medicine for lung problems. After a little more time and her conditions got worse, I realized it was a heart disease when she was 5 years old.” (Mother 9).
3.3. Navigation experiences
Navigation experiences showed financial hardships, and the extra non-healthcare costs made treatment access even more challenging. However, we also observed strong social capital – many of the caregivers were able to borrow money from their family members and neighbors. Some caregivers followed their families’ or neighbors’ suggestions when choosing hospitals.
“The most difficult thing about all this is money.” (Mother 6).
“Sometimes, when I don’t have money, I only buy enough [medications] for one month.” (Mother 4).
“We borrowed money from our family and neighbors. Thank God …” (Mother 8).
Caregivers were not initially aware of CHD-specific services. Some caregivers were referred to multiple hospitals before reaching the hospital that offered surgery. Because most of the children were misdiagnosed with a cold or unknown disease at the time, caregivers had a difficult time choosing where to get care. The nearest public health center was the first point of care, but as symptoms persisted and exacerbated, caregivers started seeking alternative services such as private clinics and hospitals. Many caregivers went to multiple health centers and hospitals before getting referred to the current hospital.
Caregivers faced financial and practical barriers. First, caregivers faced costs for transportation, check-ups, consultations, and medications, and also needed to take time off work for appointments.
“Because of breastfeeding, we have to travel together in a taxi and close our store to come to the hospital … It costs a lot.” (Father & Mother 2).
At the current hospital, many had their consultation fees waived by providing a letter from their residency that showed financial hardship. These letters have to be renewed yearly. Some caregivers mentioned that they were not aware of such benefits and they were not able to go back to their town office to get that letter since they live far away from Addis Ababa.
3.4. The permeability of services
The permeability of services refers to how easily patients can access services. All of the caregivers had navigated the complex referral system to the teaching hospital. Caregivers felt that health centers and hospitals were relatively permeable for follow-up appointments once a CHD diagnosis had been given. However, accessing surgical care was not easy. Some caregivers have waited for more than 3 years. After two to three visits, caregivers were told to indefinitely wait for the surgery. One caregiver was given an option to send her child abroad for the operation.
“Doctors ordered the operation to be performed in a foreign country because my child’s condition was serious. At first, I was sad that my child would never return if she goes abroad. It was especially difficult when they asked for my signature to take the baby. It was difficult [decision] at that time but I decided to wait longer …” (Mother, 7).
Many caregivers described the helplessness they felt, mostly due to unpredictable surgery accessibility and indefinite waiting times.
3.5. Appearances at health services
Caregivers received services for their children through the diagnosis, medications, follow-up visits, and emergency care. Children who were born at home were more likely to experience a delay in diagnosis. Interviews indicated that time from birth to diagnosis was short if not misdiagnosed, but the time from diagnosis to treatment was long. Many caregivers mentioned how their child’s cold misdiagnosis contributed to the delay in CHD diagnosis. Caregivers also perceived it as a “mere cold” at the time. Many visited public health centers and public and private hospitals with recurring symptoms. Many described their frustration navigating multiple services, but some mentioned that being diagnosed and finally being able to receive a tangible treatment-like operation helped them.
“There are a lot of people here, so they asked me to go to a private hospital nearby for a lab test,
and I paid a lot of money there.” (Father, 9).
“It was hard when I was going to several hospitals, but I felt better when I came here and learned that she can get surgery.” (Father, 3).
3.6. Adjudications, offers, and resistance
Due to the uncertainty and lack of clear guidelines for CHD care, many caregivers were frustrated with healthcare experiences. They seemed to be vulnerable to adjudications during the process of seeking a CHD diagnosis, and upon receiving the diagnosis, had to wait for the operation with ambiguous advice about what to do next. Some parents were told there was nothing to do except wait for an operation. This quote also shows the caregiver’s resistance to the surgeon’s offer to seek medical care abroad. The last part of the quote demonstrates the recursive nature of the candidacy model as well.
“It was especially difficult when they asked for my signature to take the baby. It was difficult [decision] at that time but I decided to wait longer …” (Mother, 7).
“At first, I went to a health center, and after a week, her conditions got worse, so I went to a.hospital and got medicine. This time, a big hospital, and private.” (Father, 5).
Little resistance was identified during the interview, and many caregivers upheld providers’ recommendations and referrals. Due to expensive medications, some caregivers could not afford medications as recommended.
“I only bought a 1 month supply instead of 3 because I could not afford it.” (Mother, 4).
3.7. Operating conditions and the local production of candidacy
CHD care was not available outside Addis Ababa, and a referral is required to visit the teaching hospital. For this reason, until caregivers met the physician who referred them, treatment plans for CHD, especially surgeries, would not be feasible. As there is only one public teaching hospital where children can be given surgery for CHD, CHD operation was geographically inaccessible to caregivers who lived outside Addis Ababa. Many caregivers traveled across the country on a bus that takes several hours to get to Addis Ababa. Without an adequate place to stay in Addis Ababa, some participants slept in the hallways of the hospital.
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