Inflammatory bowel disease (IBD), which includes Crohn’s disease (CD) and ulcerative colitis (UC), is a disease that causes inflammation in the gastrointestinal tract. IBD is a chronic disease with no cure, that requires continuous symptom management, as recurrence is common [1, 2]. Recently, the number of IBD patients in Korea has increased rapidly, and interest in the disease is also increasing. According to a study analyzing the IBD incidence rate in Korea over 30 years, from 1986 to 2015; in 1986~1990, the IBD incidence rate stood at 0.35 per 100,000 inhabitants, whereas in 2011~2015, it surged to 8.26 per 100,000 inhabitants [2]. This rapid increase in prevalence is noteworthy because it has been found to be most prominent among countries in East Asia [2].

In particular, IBD mainly occurs in young age groups, so it is important for women with IBD to have healthy pregnancies and childbirth. Women with IBD had higher risks of preterm birth, low birth weight, stillbirth, and congenital anomalies than healthy women [3]. In a study investigating the birth outcomes of women diagnosed with IBD in Korea over the past 10 years, women diagnosed with CD had higher rates of caesarean sections, stillbirths, and intrauterine growth restriction than healthy women. Preterm birth was more common in women diagnosed with UC [4]. However, these negative birth outcomes in women with IBD are related to disease activity during pregnancy, not to the disease itself [4, 5]. Women with IBD who are in remission have similar fertility rates and pregnancy outcomes to those of healthy women. However, when disease activity is high at conception, the rate of negative birth outcomes is higher than it is for women in remission [4]. Therefore, women of childbearing age who are capable of becoming pregnant or who are preparing for pregnancy should manage their disease after sufficient consultation with medical professionals to maintain a remission period before conception [4, 5].

Almost all women with IBD who had never been pregnant recognized that the disease could harm pregnancy and believed that pregnancy would make the disease worse [6, 7]. A recent study targeting women with IBD confirmed that most IBD drugs, including amino-salicylate, biological agents, and thiopurine, except methotrexate, are safe for women preparing for pregnancy, during pregnancy, and after childbirth [8, 9, 10]. Therefore, it is emphasized that women who are planning to become pregnant should continue taking their IBD medications to maintain the IBD remission phase. Nonetheless, women with IBD tend to voluntarily stop taking drugs to treat IBD during pregnancy due to the mistaken belief that those all drugs can harm the fetus, and they have concerns about heredity and fear of giving birth to a child with a deformity due to disease or drugs [8, 11]. Such IBD-related pregnancy anxiety may lead to voluntary childlessness [7, 11].

Anxiety and negative beliefs concerning pregnancy among women with IBD are deeply rooted in a lack of knowledge [7], and women with IBD in Korea tend to have low levels of knowledge about pregnancy [11, 12]. Therefore, accurate information about pregnancy should be provided to women with IBD to reduce their anxiety and help them consider pregnancy. It is already known that it is important for women with IBD to maintain remission during pregnancy, but so far, study related to pregnancy has only focused on the knowledge, anxiety, and outcomes of pregnancy in women with IBD. The effects of a pre-conception program for women with IBD to maintain remission for a healthy pregnancy have yet to be examined.

To promote better health management behaviors for maintaining remission, self-efficacy (the ability to manage one’s health independently) is required [13]. A high degree of self-efficacy corresponds to positive health-related behaviors and attitudes, as well as improved stress management. As a resource for enhancing self-efficacy, Bandura [14] described performance accomplishment, which refers to actually performing the behavior, the vicarious experience obtained through the successful behavior of others in a similar situation, verbal persuasion, and the physiological state. Previous studies have already proven the effectiveness of education developed using self-efficacy enhancement resources to improve the self-management ability of patients diagnosed with IBD [13, 15]. Despite the importance of maintaining remission period prior to pregnancy for women with IBD preparing for pregnancy, there has not been a program developed to improve their health care self-efficacy. Therefore, in this study, a self-efficacy improvement strategy was applied to develop and apply a pre-conception program and evaluate its effectiveness. This study was conducted to evaluate whether a pre-conception care program for women with IBD (PCCP-IBD) based on self-efficacy theory is effective in improving self-efficacy related to IBD management, which is the primary outcome of this study. In addition, we examined the improvements in IBD-related pregnancy knowledge and the reduction of IBD-related pregnancy anxiety (secondary outcome). A qualitative study was also conducted to gain a deeper understanding of the changes experienced by participants through the program.

The hypotheses of this study were as follows: First, there will be a significant difference in self-efficacy for IBD management scores between the intervention group and the control group. Second, there will be a significant difference in IBD-related pregnancy knowledge score and IBD-related pregnancy anxiety score between the intervention group and the control group.

As a result of this study, PCCP-IBD, using self-efficacy enhancement strategies, was effective in improving self-efficacy for IBD management. This supported the results of a previous study that showed that self-efficacy enhancement strategies had a positive effect on self-efficacy for IBD management [13]. It is meaningful that this program improved the participants’ confidence in disease management. The reason for these results is thought to be the effect of performance accomplishment, a strategy that allows participants to practice health behaviors on their own and directly experience change by filling out pre-conception care diary during the program. In addition, the vicarious experience, which indirectly allows participants to experience positive changes by sharing the experiences of other participants through small group discussions, and the physiological states, which provides encouragement through tele-coaching, are considered effective. In fact, the results of the interview content analysis showed that the participants experienced symptom relief through writing a diary and gained confidence and a sense of accomplishment in being able to manage it on their own. In particular, it was confirmed that the effect persisted even after four weeks of the program in the intervention group. This result shows that the self-efficacy for disease management that arises from experiencing symptom management can last for a long time. In the future, there is a need to conduct study to confirm whether the improvement in disease management self-efficacy through this program actually affects the disease-related behavior of women with IBD.

PCCP-IBD was effective in improving IBD-related pregnancy knowledge. In particular, one week after the end of the program, the knowledge score of the intervention group increased noticeably, which supports the results of previous studies that pregnancy-related education programs contributed to improving reproductive health knowledge in a short period of time [28, 29]. There was a significant difference in changes over time between the two groups. Education was provided through structured educational materials in each session, and the researcher’s answers to questions asked by participants during tele-coaching. It can be seen that the verbal persuasion strategy was effective. As a result of quantitative study, not only knowledge related to drugs, but also the relationship between disease inheritance and pregnancy, management during pregnancy, childbirth methods, and outcomes were improved. It was interpreted that awareness of the possibility of healthy pregnancy and childbirth among women with IBD has increased. Therefore, in the future, educational materials and education on pregnancy-related information desired by women with IBD should be actively provided.

This program effectively reduced IBD-related anxiety, and a significant decrease in anxiety was confirmed over time in the intervention group. In particular, anxiety levels remained low even after four weeks of the intervention. This reduction in anxiety is believed to be an effect of the vicarious experience strategy, which confirmed the successful pregnancy experience of patients in the last session through videos. This supports the previous research showing that self-efficacy-based educational intervention for pregnant women has a significant effect in reducing anxiety of pregnancy by providing vicarious experiences through a healthy role model [30]. During the interview, participants expressed that they had been unnecessarily worried due to incorrect knowledge through videos about the pregnancy experiences of women with IBD, including those with stomas, and that their thoughts about pregnancy had changed positively. However, unlike the quantitative research results showing that anxiety was continuously reduced, the qualitative research results confirmed that new practical concerns arose due to the participants’ difficult experience of infertility-related procedures. Accordingly, there is a need for increased attention to infertile women with IBD and the provision of patient-centered counseling and treatment, involving obstetricians and gastroenterologists.

However, when we further analyzed the changes in pregnancy-related anxiety of the participants by item, which was quantitative data, it was found that parenting-related anxiety persisted (Supplementary Table 2), potentially due to the perceived burden of raising children while managing IBD. It is known that women with disease experience more parenting stress than healthy women [31], and this stress can worsen IBD symptoms [32]. One study reported that disease activity increased within one year after giving birth in one-third of women with IBD [33]. Therefore, there is a need to consider developing programs for stress management in women with IBD during the postpartum period. In particular, disease activity during the postpartum period was found to increase in women whose disease was active before and during pregnancy [34]. This result confirms the importance of disease management before and during pregnancy. The program not only aims to maintain pre-pregnancy remission, but also includes information on disease management during pregnancy and the postpartum period. Therefore, it is believed that the PCCP-IBD program may also have an impact on the health of postpartum women.

Next, we discuss the application of the program conducted in this study. The age of the participants in this study was limited to adult women of childbearing age between 20 and 45 years. Participants were recruited regardless of whether they wished to become pregnant. Many women with IBD avoid pregnancy, and the purpose of pre-conception education is typically to prepare women physically and mentally for a healthy pregnancy, provide an opportunity for women to think about when to conceive, and avoid unwanted pregnancies [8]. Therefore, future studies should provide educational interventions tailored to participants’ intentions regarding pregnancy.

In this program, the small-group discussions provided an effective opportunity for indirect experiences. The participants in the groups were of a similar age, and all were concerned about pregnancy and women’s health, thus establishing a bond based on mutual concerns. These discussions may have prompted participants to reflect on their own healthcare and commence disease management. The facilitator flexibly reconfigured the goals and content of the sessions to suit the groups’ specific needs, thereby effectively providing customized education.

In particular, the advantage of this study is that individual tele-coaching was provided to gain an in-depth understanding of participants’ personal concerns that may not have been revealed in small group discussions. When participants who had experiences of infertility or failed procedures expressed complex feelings about pregnancy, the researcher accepted those feelings and encouraged those participants to thoroughly examine their emotions and make pregnancy decisions for themselves. These participants said that their fears were reduced after viewing their pregnancy from a neutral point of view. Individual coaching can provide opportunities to effectively address the complex psychological states of individual participants.

The pre-conception care diary provided to participants in this study helped participants to improve and maintain their health management behaviors by stimulating reflection. Participants expressed that the diaries were helpful for disease management and that they were willing to use them for future management. App-based diaries for IBD patients have recently been developed and used in other countries [35]. Therefore, patients utilizing the app-based diary for disease management may be useful for women with IBD preparing for pregnancy.

The main strength of this study is that, for the first time, a pre-conception care program tailored to the characteristics of the disease was developed and its effectiveness was confirmed for women of childbearing age diagnosed with a chronic disease. In particular, the advantage is that quantitative and qualitative methods were used to understand the women with IBD and confirm the effectiveness of the program. Qualitative data analysis confirmed that they started reproductive health care to prepare for their pregnancy, which was not highlighted in the quantitative study.

However, this study has some limitations. First, since the study participants were recruited at a single hospital, there are limitations in representing Korean women with IBD. Therefore, a repeat study targeting multicenter patients is needed in the future. Second, we did not examine whether the effectiveness of program differed depending on IBD type. Previous studies have shown that women with CD experienced more negative birth outcomes than women diagnosed with UC [3, 4]. This implies that women diagnosed with CD might have higher anxiety, but this study did not confirm that hypothesis. Therefore, future studies should attempt to determine whether the program effectiveness differs between women diagnosed with CD and those diagnosed with UC. Third, since this study also included women who did not necessarily intend to become pregnant, additional study is needed to clarify the effects of the intervention on women who are actually preparing for pregnancy or women who do not intend to become pregnant. Finally, the effectiveness of the program was assessed after one and four weeks. Therefore, in the future, long-term follow-up studies should be conducted to confirm how effective PCCP-IBD is in actual pre-conception management practices and for women with IBD during pregnancy and postpartum.

The number of women of childbearing age diagnosed with IBD is rapidly increasing in Korea. Nevertheless, there is a lack of education regarding pregnancy for women with IBD. Therefore, it is expected that the results of this study can be usefully applied to clinical practice, as follows: First, nurses can conduct education in the clinic using the educational booklet developed in this study when consulting young women with IBD about pregnancy. Second, the pre-conception care diary developed in this study can guide women with IBD to manage their own IBD and their reproductive health. Third, the content of this program will be developed as an online program, such as an application, in order to provide education without being limited by time and place. In addition, these materials can be used to educate medical staff who find it difficult to counsel IBD patients about reproductive health. Through various applications of this program, we believe that self-care can be enhanced by raising awareness about the importance of maintaining the remission period before pregnancy in women with IBD and by increasing self-efficacy in disease management. In addition, it is expected to reduce anxiety and shift their perspective of pregnancy and create a positive perception of pregnancy.

This study developed and applied a reproductive health education program for women of childbearing age diagnosed with IBD by applying Bandura’s [14] theory regarding resources for enhancing self-efficacy. Quantitative and qualitative data analyses confirmed that the program in this study was effective in enhancing self-efficacy for IBD management, IBD-related pregnancy knowledge, and reducing IBD-related pregnancy anxiety in women of childbearing age with IBD. This study makes a meaningful contribution from a practical point of view in that it developed and applied the first reproductive health education program for women of childbearing age with IBD in Korea. It is also essential that this educational program focusing on women’s health (specifically, IBD management before, during, and after pregnancy) and aiming to promote reproductive system health management was developed and provided by nurses. Furthermore, the booklets, pre-conception care diary, and educational materials used in this program can be utilized in a clinical setting. It is expected that reproductive health counseling and education by nurses will become more common in clinical practice in the future.

Supplementary data to this article can be found online at https://doi.org/10.4040/jkan.24010.

Supplementary Table 1

Five Steps of Questions during the Individual Tele-Coaching

Supplementary Table 2

Changes in IBD-related Pregnancy Anxiety after the PCCP-IBD in the Intervention Group

Supplementary Figure 1

Parts of the educational material and pre-conception care diary.