Perceived Stigma and Self-Efficacy of Patients With Inflammatory Bowel Disease-Related Stoma in China: A Cross-Sectional Study

Abstract

BackgroundPatients with inflammatory bowel disease (IBD)-related stoma face physical, psychological, and social adjustment challenges. However, knowledge about stigmatization and self-management, which is important for clinical care and patient education strategies, is lacking.ObjectiveTo evaluate the level of stigma and self-management ability of Chinese patients with IBD-related stoma using an online questionnaire.MethodsParticipants were recruited from two general hospitals in mainland China and the internet platforms of the China Crohn's and Colitis Foundation (CCCF). Participants completed a questionnaire, which gathered data on sociodemographic, clinical, and experience in online groups, self-efficacy scale, and social impact scale. The influencing factors of self-efficacy and perceived stigma were assessed by stepwise multivariate regression analyses.ResultsOne hundred and seventy-six respondents were included. Most of the respondents (78/176, 44.32%) spent between 500 and 999 RMB ($77–153) on ostomy care accessories monthly. Three patients reported using homemade ostomy products. The average score on the self-efficacy scale was 75.79 ± 23.91, which reflected a moderate level of self-efficacy, and 69 (39.2%) respondents had low-level self-efficacy. The average social impact scale score was 62.76 ± 12.69, which reflected a moderate level of perceived stigma. Forty-three (24.43%) patients experienced severe levels of perceived stigma. Stepwise multivariate regression analysis revealed that self-efficacy was associated with educational level (P = 0.007), whereas stigma was associated with nursing privacy (P = 0.021) and acceptance by the closest person (P = 0.005). A total of 91% of respondents who participated in online peer support groups believed the groups were helpful for disease management.ConclusionsChinese patients with IBD-related stoma reported a moderate degree of perceived stigma; their level of self-efficacy was low to moderate. High educational level was associated with high self-efficacy. Notably, acceptance of the stoma by the closest person was an influencing factor protecting patients from perceived stigma. Interventions aimed at improving patient education, reducing economic burden, and strengthening social support should be considered to help improve the living conditions of patients with IBD-related stoma.

The effect of self-efficacy levels of patients with intestinal stoma on stoma adaptation

“…In parallel with this study, it has been shown in the literature that social support has positive effects on stoma adaptation [ 23 , 34 ]. Wang et al showed that as the duration of stoma increases, self-efficacy increases, but self-efficacy levels decrease again in patients with a stoma longer than 5 years [ 35 ]. The time elapsed since stoma formation may have a positive effect on ostomy adaptation.…”

“…While self-efficacy is described as an individual’s belief in his or her very self, it is a factor that determines to start positive health behaviors and resume them, and it is a feature that determines how an individual will feel, think and behave [ 16 ]. In the literature, there are not only similar studies that show the stoma adaptation level to be medium [ 22 , 34 ] but also studies that found the self-effectiveness level to be over average [ 19 , 20 , 35 ]. In this study, the self-efficacy level was determined to be at a medium level.…”

“…In this study, it was found that there is a meaningful difference between health personnel support and stoma adaptation. On the other hand, in a study performed in Korea with 125 individuals with intestinal stoma by Nam et al, it was determined that health care personnel support affects stoma adaptation more than self-efficacy and family support [ 35 ]. Especially for a long time after the duration of the stoma, to solve problems such as skin problems around the stoma, excretion leak, gas or smell production, and sexual complications, some of which are new or cannot be solved throughout time, patients need expert assistance [ 38 ].…”

The effect of stoma self‐efficacy of people with stoma on their sexual function and satisfaction

“…The research population consisted of people with stoma who applied to the stoma and wound care unit of the hospital. The research sample consisted of volunteers aged between 18 and 65 with permanent stoma, who were not actively receiving any surgical treatment or chemotherapy or radiotherapy and who were sexually active. Individuals who were on antidepressants or sedatives and diagnosed by physician with a psychiatric disease and/ or sexual dysfunction and those receiving/continuing treatment for these diagnoses were excluded from the research.…”

“…If self-efficacy levels of individuals are high, they become active and exert more effort to deal with a situation [17]. For these reasons the self-efficacy of stoma patients is key to their adaptation to a new life and their psychological well-being [18] and may also affect sexuality, a component of psychological well-being. No study has been found in the literature that analyses the relationship between stoma self-efficacy and sexual life.…”