A total of 208 participants answered the full questionnaire. The mean age was 27 6.7 years and 79.8% women (166/208) lived with a partner. Most of the participants were non-white (60.6%; 126/208) and 82.7% had elementary or middle school level education. Considering obstetric history, 22.6% of the women had had a previous preterm birth. Regarding gestation outcomes, 64/208 women had a preterm birth. There was one neonatal death for extreme preterm birth and one stillbirth. There were 12 readmissions to hospital and 75% (9/12) were premature newborns.
Three categories of analysis were identified to explain how the women identify and understand the risk of preterm birth. We present the results obtained for the following categories of analysis:
- Risk perception mediated by health professionals
- Self-perception of risk through personal experiences and relationships
- Perception of treatment success.
Risk perception mediated by health professionals
Overall, after a healthcare professional provided a clear and detailed explanation about the diagnosis of a short cervix, the women understood both the information given and the preterm birth risk factor. These women were able to recognize the association between a short cervix and preterm birth and the importance of early diagnosis for preventing premature birth. Moreover, they were also able to understand that there are other risk factors for premature birth, such as twinning or other maternal morbidity, which together increase the risk of prematurity.
“Oh based on what the doctor said, he said that my cervix is low and could not hold the weight of the baby” (patient 60)
“…although I had a premature birth because of twinning and all that, so it was already expected” (patient 2)
Participants reported that the information given by health professionals involved in the P5 trial was impartial. The health professionals clarified that the P5 trial was clinical research and that agreeing to participate would not guarantee that the woman would deliver at term. Participants reported that doctors said that “....there is no conclusion if it [treatment] really works” and that “...maybe the treatment could not keep the pregnancy [the baby in the womb]”.
The well-established relationship between healthcare professionals and the patient brought confidence in the treatment and safety to the patient on several occasions. Care, attention, answers to questions, trust and the excellence of the medical team were mentioned, including statements that the doctor was always very concerned about the patient, the feeling that the doctor was her “lifeboat”, and that having access to the doctor by phone at any time to solve the patients' doubts, was a good experience. One woman even considered that all monitoring and perinatal care from P5 trial health professionals was as responsible for the baby's health as the treatment itself.
“...the doctor's quality, treatment, care, the way he explained to me about the treatment, his follow-up for months and after the treatment. For me, I think he was the main factor responsible because of his treatment, care, concern and guidance. Do you know what I mean? For me, in addition to progesterone, it made me successful” (patient 170)
Most women reported feeling gratitude for the health professionals who accompanied them during pregnancy and the opportunity to participate in the P5 study.
“I have to say that it was an amazing experience [the treatment], I really appreciate it. The doctors are all attentive, they are wonderful; the medical team is to be congratulated, the study team as well” (patient 160)
Many women also thanked the study for the opportunity to receive a short cervix diagnosis during their first pregnancy, without having to go through the experience of having a premature child before being diagnosed.
“I would like to thank [the study] for this opportunity…it helps me a lot because I know that I have a short cervix; it was something new to me and I received help…thank God I got to the end and I didn't have a preterm baby” (patient 116)
Self-perception of risk from personal experiences and relationships
Having had an unsuccessful experience in previous pregnancies, such as miscarriage, stillbirth, neonatal death, premature birth or having the baby admitted to a Neonatal Intensive Care Unit (NICU) led women to associate their history with the informed risk in the current pregnancy, influencing their self-perception of risk. This created concern and anguish, because these women did not want to go through that suffering again. One woman reported that “my other babies [previous gestations], it was so hard following them in the NICU”, so her wish was to “leave [the hospital] with the baby in her arms”.
Family experiences have also influenced the patients' decision to accept treatment. Having someone close to them who had suffered an adverse outcome during their pregnancy helped women to recognize preterm birth adverse events, and stimulated a feeling that something similar could happen to their baby.
“...I had a case of preterm birth in my family and the baby died because he was born at 5-6 months, so I didn’t think twice. I agreed right away (to participate in the P5 trial); I said that if it will keep my baby inside my womb, I will accept it until the end”(patient 78)
Perception of treatment success
Although this study has not yet demonstrated the higher efficacy of one treatment in relation to the other, and considering that the literature is controversial regarding the effectiveness of treatments used to reduce premature birth incidence, overall, patients considered that the offered treatment to avoid premature childbirth had a positive result, and that it worked properly. Even those who experienced a premature birth considered that the treatment worked, because the birth would have happened earlier than it did without this treatment. The feeling of successful treatment is clear in phrases like “it worked because if I hadn't done it, I could have lost my son” or “I felt like it was my salvation”. Patients seem to project their hopes on the treatment, waiting for any benefit that it may bring to their pregnancy.
For some women, even without reaching a term pregnancy, the treatment was able to prolong gestation, which would have brought many benefits to their babies' survival. Women understand that neonatal outcomes influenced for prematurity depend on gestational age at the time of delivery and that the closer to a term gestation, the lower the risks would be.
“I had a previous pregnancy and hadn't done this treatment, so I didn’t even get to 30 weeks. Thus, I lost my baby. In this gestation, I maintained my pregnancy to 33 weeks with the treatment, and my baby was born; now he is fine, he is very strong” (patient 14)
Most women reported that the treatment proposed was able to “keep the baby until the appropriate time”, while others mentioned that having their baby healthy at the time of the interview is already the answer to the question, because “it worked because my baby is in my arms right now”. Another reported factor was a decrease in some patient symptoms such as pain, bleeding and an increased feeling of security and tranquility. These feelings were cited not only as a consequence of performed treatment, but also as being responsible for the treatment success.
“It worked [the treatment] well. It worked because I have my son with me, well and healthy, without any risks. Do you know what I mean? It worked because I kept my pregnancy safe until the end” (patient 47)
“After I started [the treatment], the bleeding stopped, and the pain also stopped, so it worked for me. Also, I left the risk area and my pregnancy became stable” (patient 64).
Women stated that they had undergone successful treatment, mainly by comparing the current pregnancy with their previous experiences. They also reported their personal experience of having a previous baby on NICU and all of the suffering linked to this moment of uncertainty, regarding whether the premature newborn would survive. Many women reported that they could carry the pregnancy to term with the managed treatment. Few patients believed that the performed treatment did not work, and all of them reported stillbirth or neonatal death as the final result of the pregnancy. Half of these neonatal outcomes were linked to extreme prematurity. Therefore, the perception of failure is strongly connected to the baby's death.
“No, it didn’t [the treatment didn’t work], because I have not been successful. If I hadn’t done this treatment, the same thing would have happened” (patient 29)
Participating in the research was also emphasized, due to the possibility of receiving adequate treatment. Some women said that they would redo the treatment and others reported that they would recommend the treatment to relatives or friends.