Five FG discussions were conducted with a total of 23 HCPs who were ever used, or still using the JSANDS system. All participants were females, either nurses or midwives who acted as focal points in the selected hospitals, with a range of 3 – 28 years of experience and ages ranged from 25 to 50 years. The focal points consisted of senior head nurses of labour and NICU departments, and senior staff nurses and midwives who used the system since its implementation.
Data analysis identified nine main issues related to the JSANDS system (Table 1): 1. System usefulness, 2. System performance, 3. Data quality, 4. The system limitations, 5. Human rights, 6. Female empowerment 7. Nurses’ strengthened competencies, 8. Sustainability of the JSANDS, and 9. COVID-19 impact on the system.
Table 1: The study themes and subthemes
1. System usefulness
· Detecting possible risk factors
· Care improvement
· Identifying marginalized population and misfortune areas
· Continuing educational opportunities
2. System performance
· Ease of use
· Privacy and security
3. Data quality
4. Human rights
· Human rights
5. Empowerment of female nurses
· Knowledge is a treasure
6. Health professionals’ strengthened competencies
· Improved work
· Promoted communication skills
7. Sustainability of JSANDS
8. COVID-19 impact
9. Limitation of the system
· Technical problems
· Possible unauthorized access
· Issues with reporting the cause of death
The system’s usefulness
All participants in the 5 FGs agreed on the usefulness of the data collected by the system and indicators generated by the system, and gave many examples of how these data could be useful. One participant talked about how the data opened an eye on many possible risk factors of stillbirths and neonatal deaths:
There were instances of stillbirths or neonatal deaths that went unnoticed. When we looked at the data generated by the system, we started to notice patterns and clusters of possible causes of neonatal deaths. Maternal preeclampsia cases, for example, used to go unrecognized, which turns out to be a cause of neonatal deaths.
The participants talked about the significant amount of possibilities of using the system and the data generated by it, which helped in the improvement of care delivered to patients and their families:
We can now know how many births, and how many deaths we had over a period of time. We also can judge our quality of care based on these deaths. Our attention to certain causes of neonatal deaths led us to start giving health education classes for mothers immediately after birth. A good feature of it is that you can know if a woman has had previous delivery in our hospital and so as to retrieve all her information in a click of a button.
The participants stated that the system allowed them to see trends and patterns of basic statistics of all deliveries and births that occurred in their hospitals over a period of time, and to compare these data with the other hospitals that were using the system, which helped in the enhancement of their performance:
The generated data are very helpful to us. We can know the number of deliveries we had for any period of time with a click of the button. We also can look at the percentage of CSs for example and compare our performance to other hospitals.
Participants talked about how accurate was the data generated by the system and described instances on how did the system detect a significant and unusual increase in the number of neonatal deaths and stillbirths. This alarming finding raised the attention of healthcare professionals in the hospital to promptly investigate the causes of this problem and to take actions. These actions included modification of some hospital policies, staff education and training, and mothers’ education during antenatal visits.
Based on the JSANDS data we noticed that the majority of the deaths occurred as a result of a defect in antenatal care. So we reached a decision that teaching mothers during this period is the basis for any change. Therefore, we gave continuing education classes for our staff and we trained up to 80% of them to be able to educate mothers.
Participants suggested that the system also helped in identifying marginalized population and misfortunate areas:
We noticed that many of the deliveries that ended with a stillbirth or neonatal death were coming from Alghowr. The long-distance to hospital was mainly a reason for them to arrive late. Now, we are given those people who come from this area more attention.
The system succeeded in highlighting some marginalized people and identified disadvantages areas in Mafraq city. Many women with complications were coming from these areas. Identifying these disadvantaged areas helped us in providing better care for them
According to the focus groups’ participants, JSANDS helped in identifying high risk population such as pregnant women with diabetes or preeclampsia. This has an important value as it helps predict possible complications. One participant commented on this “It helped us in identifying high-risk cases such as DM cases and PET cases. These cases are more susceptible to complications. They are more likely to die because of hypoxia”
Other participant commented on how the data generated by the system gave them the chance for more continuing educational opportunities:
It is a good experience. It gave us a lot of information that made us focusing on things that we did not focus on before. I mean, the hospital benefited from the system greatly. It directed our attention to the need for educating the health care team and nurses about issues related to neonatal and maternal care. It was the drive for refreshing our knowledge about certain issues related to child and mother health.
The system’s performance
Users had provided feedback relating to the system features. They identified many features that they liked about the system including the ease of use, cost-effectiveness, privacy and security, and suggested some limitation of the system. Users in all FG discussions reported that the system was simple and easy to use and it was easy to train others on the use of the system. One focal point said, “It is very easy and straightforward. I mean, it does not take much time to fill out all the information”. Another added “Not much effort was made when we trained the rest of our staff. The guidelines are easy and take no time to follow”. One of the focal points described the system as:
One can modify, amend or change any data already filled when it is needed. The identification of any case make it also flexible. I mean you only have to enter the mother’s name or her national ID number and the system retrieves all of her information; you don’t need to re-enter all her information again and again
Participants thought that the system is cost-effective, and therefore, should be implemented in all hospitals across the country “The system is cost-effective, saves a lot of money, and implementing it in all hospitals will not have high costs”.
Participants discussed the quality of data that is generated by the system and described issues related to the completeness, sensitivity and accuracy of the data. The participants discussed the accuracy of data entries and constant monitoring of these entries from a responsible person in each hospital. They liked the feature that does not allow them to save and store any case data with any missing information, and this confirms, according to them, the completeness of the data generated by the system:
The information entered is 100% correct and complete because there is always someone responsible for monitoring the entries on a daily basis to ensure that all cases have been entered. Also, the entries cannot be saved unless the case information is complete without any missing information and this is a good feature of the system so that we do not lose any important information.
Because of the usefulness, completeness, and accuracy of the JSANDS data, the participants agreed on the necessity of the adoption JSANDS as an electronic stillbirths and neonatal deaths surveillance system by the ministry of health (MOH) and to be implemented in all hospitals across the country. One participant said:
I highly recommend adopting this system. If adopted by, we can easily retrieve any information about any patient, who has had a previous admission in any hospital across the country. It is important to receive all the details of the patient’s medical history, which will be reflected in the level of service provided to this patient
Participants discussed issues related to the system consideration of human rights in general and children’s rights in particular. The participants described the system as generally secure with good privacy. According to them, the JSANDS protect patient privacy to a high degree. One participant said “In general, the system is safe, and each one of us has a user password, and there is a difference between what information each one of us is allowed to see depending on our roles”
According to the participants, the JSANDS has also acknowledged children’s rights by reporting stillbirths:
Before we started with the JSANDS, stillbirths were not registered at all. They were treated as if they were nothing or non-existent. They were not registered in the family book and no birth certificate was issued for them. Thanks to JSANDS for counting all babies
They agreed and stressed on the need to register every single death regardless of its gestational age because, according to them, “every child has the right to be registered regardless of its status and birth outcome”.
Empowerment of female nurses
The bulk of information and knowledge that the system offers has an impact on the empowerment of female nurses as, according to them, JSANDS gave them the power to stand in front of other health care team, mainly physicians, and have a good discussion about the cases:
The knowledge we get gives us power. As a female nurse, we started to have discussions with the doctors during our meeting in the death review committee. They’re listening to us now and value what we have to say about the cases, as we are the ones who meet with the mothers and fill out the forms.
Another participant described the bulk of information received from the JSANDS as a treasure that gave her a power to engage in any health related discussion:
The information that we have from JSANDS is a treasure. This treasure of knowledge gives me power, which enhanced my confidence to engage in any discussion with the other health care team.
Health professionals’ strengthened competencies
All participants were satisfied with JSANDS. They described how did the system improve their work and enhance their communication skills with the families. In addition, it changed the way they currently perceive stillbirths and neonatal deaths.
Having this system in their hospitals made them curious about getting some statistics, which changed their perception about some facts:
When we started using JSANDS, we noticed that the caesarean section rate is much higher than we expected. For example, that last 12 cases we had, 9 of them were CS. Frankly, when I saw this piece of information I was shocked by the rate. We don’t usually look for such statistics. This made me think that the current practice is not right and it has to be changed
Another participant talked about how JSANDS changed the way she responds to some cases:
What’s good about it is that when we have a woman, with a stillbirth for example, we can go back to JSANDS and retrieve her information and read her history. We see how many times she has had stillbirths and we communicate this with her doctor and encourage the doctor to do more investigation.
Participants also believed that JSANDS changed the way that the health care providers perceive the deaths and how this enhanced their sense of responsibility:
It enhanced the doctors’ accountability for their actions and care as they started focusing on the number of stillbirths and deaths that are registered under their names, and they become afraid of being labelled of having too many deaths during their shifts. This will certainly make them think more about the causes and to try their best in finding solutions.
Participants described how JSANDS promoted their communication skills with the families:
JSANDS enhanced our communication skills with families. We talk to them more which strengthen our relationship with them. I mean, you know, we are not focusing only on numbers as we used to, but rather we started focusing on the quality of care and how to benefit the family most, and not to allow them to experience any death again
Sustainability of the JSANDS
Participants have several suggestions to improve and sustain the system. For instance, some participants had suggested to integrate the JSANDS with other health information systems already employed in their hospitals. Many participants recommended integrating the JSANDS into an existing electronic health information system called Hakeem “It became more helpful if this system is combined with Hakeem. This will give us a holistic kind of information.”
Some participants believed that if they need to continue using the system, they “must get constant incentives”. One participant added “Honestly, we need financial incentives because we are overwhelmed by the workload.”
Although the system intended to capture only the most important variables related to deliveries in order not to overwhelm the users with too many entries, many users reported the need to add more information that was perceived as important in identifying high risks pregnancies such as information related to CS or NICU admission.
When we enter the maternal causes for any stillbirth or neonatal death, the choices are according to the ICD10 are general. It would be helpful if you add a small box under our choice of the maternal cause to write what exactly happened to the patient with PIH for example
The impact of Covid-19
As the focus group discussions conducted right after the COVID-19 outbreak quarantine, we asked our participants about the impact of this outbreak on the birth and delivery process and on the number of stillbirths and neonatal deaths. As the system is designed not to allow users to modify entries after 28 days’ period for a security purposes, this was perceived as a limitation by the participant, especially because some of them were unable to work while in quarantine during the COVID-19 outbreak:
The system is good and it has achieved its goals, but it does not allow us to modify entries after 28 days. We consider this a limitation because during the quarantine while we were detained in our homes and returned back to work after a month or so, we couldn’t modify the previous entries. The developer need to consider this issue for similar emergency situations
In addition, participants described situations in which the pandemic has both positive and negative impact on their work. On one hand, the outbreak impacted positively on the quality of care received by the women and their children, and on the other hand, impacted negatively on the women care seeking behaviours. One participant responded:
It was a positive impact. Although the number of births is the same, the mothers and their infants received higher quality care because of the many precautions to limit the transmission of the virus. For us as a staff, we had to work harder to achieve this. Every woman has her own room, with no visitors and high quality of care.
Another participant talked about the negative impact the COVID-19 has on care seeking behaviours of women:
The pandemic affected negatively the time of seeking care, as we had many premature births as a result of that delay. We had higher premature deaths during the months of April and May because of the effect of the pandemic on seeking care.
One participant suggested a negative financial impact of the pandemic on the families who lost their jobs during the quarantine, which negatively influenced the maternal health:
I think another impact of the COVID is the financial impact. Many families lost their income because of the quarantine, which impacted the women health and we started to have more anaemic women
Limitation of the system
Although the participants liked the performance of the system, they identified some potential limitations of the JSANDS. They reported some technical problems, such as problems with the internet connection and occasional loss of previously stored data “It happened to me twice to complete the data about a delivery and the next day it was gone. I think it might be a connection or a technical problem.”
Some focal points expressed concerns about one limitation that may lead to unauthorized access to patient records as the screen does not shut down automatically when left without signing out “but in case if one forgets to sign out, it does not shutdown automatically and the screen remains open which may allow others to access private information without permission.”
Another limitation that was recognized by the participants was about selecting the main cause of death from a drop-down menu that contains causes of deaths based on the International Classification of Diseases-Perinatal Mortality (ICD-PM). When the drop-down menu contains options that they believed none of which quite fit, they have to choose “others”. The participants suggested to add a free-text box where they could type what they believe is the main cause of death:
When we record the cause of death we need to choose specific causes of death. But sometimes we can’t find the main cause of death in the list and according to ICD 10, we need to choose “others” as a cause. So it would be good to give us a choice to type this in a free-text box. I mean after choosing “others” a box should be opened to give us the chance to type our findings