Inflammatory bowel disease (IBD) causes inflammation in the gastrointestinal tract, and encompasses Crohn's disease and ulcerative colitis [1]. IBD is a chronic disease that cannot be cured, and requires continuous symptom management due to repeated cycles of symptom remission and relapse. Since IBD mainly occurs in younger age groups, maintaining remission is important [1, 2].
Crohn's disease has the highest incidence between the ages of 20 and 30 years, while the incidence of ulcerative colitis peaks between the ages of 30 and 40 years [1]. In the past 30 years, South Korea experienced a dramatic increase in the number of IBD patients [1]. Incident cases of Crohn's disease most often occur in males in their 20s and in females in their teens, and while the highest incidence of ulcerative colitis is found among in males in their 60s and females in their 20s [2].
Women with chronic conditions are usually considered to have high-risk pregnancies [3]. Therefore, nursing interventions to promote reproductive health in women susceptible to high-risk pregnancies can contribute to improving the healthy pregnancy rate in Korea, which is the only OECD country with a fertility rate of less than 1 [4]. It is crucial that women with IBD have healthy pregnancies and childbirth. Women with IBD in remission have similar fertility rates and pregnancy outcomes to those of healthy women [5]. However, when disease activity is high at conception, the rate of negative birth outcomes is higher than it is for women in remission [5]. Therefore, interventions to maintain remission before conception are necessary [5, 6].
The symptoms of IBD are very diverse, including abdominal pain, diarrhea, diarrhea with blood or mucus, weight loss, fatigue, malnutrition, anemia, intestinal stricture, and perianal fistula [7]. In women diagnosed with IBD, these symptoms can affect pregnancy outcomes. A meta-analysis of studies conducted over 30 years to understand the birth outcomes of women with IBD showed that women with IBD had higher risks of preterm birth, low birth weight, stillbirth, and congenital anomalies than healthy women. These negative birth outcomes were more common in women with Crohn's disease than in those with ulcerative colitis [8]. A study investigating the birth outcomes of women diagnosed with IBD in Korea over the past 10 years, women diagnosed with Crohn's disease had higher rates of caesarean sections, stillbirths, and intrauterine growth restriction than healthy women. Preterm birth was more common in women diagnosed with ulcerative colitis [9]. However, these negative birth outcomes in women with IBD are related to disease activity during pregnancy, not to the disease itself [6, 9]. A recent study reported that thiopurines, an immunomodulatory drug often used for the treatment of IBD, affected the incidence of stillbirth, preterm birth, and large-for-gestational-age infants when used during pregnancy [10].
Many women with IBD experience pregnancy-related anxiety [11–13], which can lead to voluntary childlessness. Studies have found that approximately 20% to 30% of women with IBD did not want to become pregnant because of their intense fear and anxiety about pregnancy [12, 14]. 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 [11, 12]. Women with IBD also expressed fear of caring for a child after childbirth [11]. Although international IBD guidelines indicate that the continuation of most medications during pregnancy, except for methotrexate, is effective for a healthy pregnancy and childbirth. However, women with IBD tend to stop taking drugs to treat IBD during pregnancy due to the mistaken belief that those drugs can harm the fetus [15]. According to a previous study that investigated pregnancy among women diagnosed with IBD in Korea, women with IBD had concerns about heredity and fear of giving birth to a child with a deformity due to disease or drugs. As in previous international studies, women avoided pregnancy for this reason [14].
Anxiety and negative beliefs concerning pregnancy among women with IBD are deeply rooted in a lack of knowledge [12], and women with IBD in Korea tend to have low levels of knowledge about pregnancy [13, 14]. 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, research 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 [16]. A high degree of self-efficacy corresponds to positive health-related behaviors and attitudes, as well as improved stress management [17]. As a resource for enhancing self-efficacy, Bandura 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 [17]. 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 [18]. Therefore, the self-efficacy enhancement strategy was applied in this study to develop and apply the pre-pregnancy program and evaluate its effectiveness. The study was designed to evaluate whether a pre-conception care program for women with IBD (PCCP-IBD) based on the theory of self-efficacy would improve pregnancy-related knowledge and anxiety, as well as self-efficacy related to IBD management.
The purpose of this study was to develop and implement a pre-conception care program for women of childbearing age with IBD, and to investigate its effects on IBD-related pregnancy knowledge, IBD-related pregnancy anxiety, and self-efficacy for IBD management.
The hypotheses of the study are as follows: there would be a significant difference in pregnancy-related knowledge score, pregnancy-related anxiety score, and self-efficacy related to IBD management measured before the intervention, 1 week after the intervention, and 4 weeks after the intervention between the intervention group and the control group.