The social stigma of infertile women in Zhejiang Province, China: a questionnaire-based study

The present questionnaire-based study was conducted in Women’s Hospital, Zhejiang University School of Medicine, Hangzhou, China between 1 Oct 2017 and 31 Mar 2018.

A population that includes a minimum number of individuals of five to 10 times higher than the number of scale items is required [15]. As the ISS contains 27 items, a total of 270 women meeting the study criteria were required for the present study. The inclusion criteria involved being a primary school graduate at a minimum, receiving infertility treatment, and agreeing to participate in the study. The exclusion criteria included: (i) severe heart, brain or kidney diseases; (ii) severe mental disorders; (iii) genetic diseases; and (iv) severe organic diseases in the reproductive or endocrine system.

We selected 298 female infertility patients among the women who were accepting treatment for assisted reproductive technology (ART) in the hospital. Twenty-eight refused to participate, with the remaining 270 agreeing to participate in the study. Finally, 254 respondents successfully met the inclusion criteria.

After reviewing the literature and consulting the relevant experts, we designed a general information questionnaire and a disease information questionnaire (Additional file 1: Table 1 Part A). The former mainly investigated age, education level, income, family type, work status, medical payment status and marital status. The latter mainly investigated previous pregnancy, planned fetal number, infertility cause, and duration of infertility.

The Chinese ISS questionnaire was designed by Fu et al. (Additional file 1: Table 1 Part B). and contains 27 items divided into four factors: self-devaluation (7 items), social withdrawal (5 items), public stigma (9 items), and family stigma (6 items) [15]. The responses to each item were based on a 5-point Likert scale (1 = completely not agree, 2 = not agree, 3 = not sure, 4 = agree, 5 = completely agree). All items were positively worded. Thus, the total score ranged between 27 and 135, with a higher score representing a higher level of stigma.

Before the investigation was carried out, four nurses with at least 3 years of working experience were recruited and trained as investigators. The investigators explained to the participants the purpose, significance and method of filling out the questionnaires and explained the contents of the questionnaire if the participants did not understand. The participants were required to complete the general information questionnaire, disease information questionnaire, and ISS questionnaire independently.

Data analysis was performed by using SPSS (version 18; SPSS Inc., Chicago, IL). Numbers and percentages were utilized to describe discrete variables, and means and standard deviations were utilized to describe discrete variables. Cronbach's α coefficients were calculated to evaluate the internal consistency of the scales within and between the four ISS factors. Student’s t test was applied to assess the significance of each stigma factor. Student’s t test, one-way ANOVA (plus Tukey post hoc analysis) and multiple stepwise regression analysis were performed to identify factors affecting stigma. The value 0.05 was set as the threshold of significance.

The study was approved by the Ethics Committee of Women’s Hospital in the Zhejiang University School of Medicine (project 20170186). Furthermore, verbal and written consent was received from the women who agreed to take part in the research.

The characteristics of the participants are listed in Table 1. All respondents were married and had no children. The majority of them were 26–45 years old, and their duration of infertility was over three years. Approximately two-thirds of the respondents were employed, had conceived before, and had no medical insurance. Tubal problem was the major cause of infertility.

The questionnaire results showed that the total stigma score of the respondents was 66.39 ± 21.96. The 25% percentile, median, and 75% percentile were 49, 66 and 80, respectively. The skewness was 0.25. The average item score for the total ISS was 2.13 ± 0.81, while the average item scores for the factors self-devaluation, social withdrawal, public stigma, and family stigma were 2.11 ± 0.91, 2.64 ± 1.05, 1.91 ± 0.88, and 1.88 ± 0.88, respectively. Compared with the neutral value of 2.5, social withdrawal showed a significantly higher value, whereas the other three factors showed significantly lower values. Thus, social withdrawal was remarkably present among the respondents.

The Cronbach’s α coefficient represents an estimation method of internal consistency used for Likert‐type scales. In the present study, the Cronbach’s α coefficient of the total scale was determined to be 0.968, that of the factor self‐devaluation was 0.910, that of the factor social withdrawal was 0.877, that of the factor public stigma was 0.961, and that of the factor family stigma was 0.82. Accordingly, the internal validity of the scale was quite good.

Next, we tested the association between stigma and the variables investigated in the general information questionnaire and disease information questionnaire. Taking the total ISS score as the observation index, a one-way ANOVA or Student’s t test was performed, which showed that the total ISS score was statistically associated with education level, monthly income, work status, medical insurance coverage, infertility factors and duration of the infertility period (P < 0.01; Table 1).

Based on the above, a multiple stepwise regression was further carried out; all variables with a P value < 0.05 were included in the analysis. As a result, monthly income and the duration of infertility were retained in the equation for the multivariate stepwise regression. As shown in Table 2, monthly income had a negative predictive effect on the total ISS score, indicating that higher monthly income was associated with a lower degree of stigma. In contrast, the duration of infertility had a positive predictive effect on the total ISS score, indicating that longer infertility was associated with a greater degree of stigma.

The present study shows that infertile women generally have a sense of stigmatization, particularly for the factor of social withdrawal. These results are similar to the results of Donkor et al. and Hollos et al. [11, 17]. In 2015, Jansen et al. observed 432 infertile women seeking treatment in the United States through online forums and pointed out that social withdrawal is one of the mechanisms used by infertile women to cope with stigma [9]. According to the social culture and traditional concepts in China, family succession has become an ethical issue in the public's mind and a generally accepted fertility value [18]. Many female infertility patients themselves have a strong desire to conceive and are more sensitive to words such as "pregnancy" and "children." Most of their peers already have children, and they feel different from others. They feel upset when asked about their children or when they face comments from others. They feel "pathetic" in the eyes of others and are considered a "joke." To escape these inner thoughts and avoid embarrassing situations, they are unwilling to go to parties with friends who have children, participate in activities, or contact people, which might result in social withdrawal.

According to the one-way ANOVA, the affecting factors mainly include education level, monthly income, occupation, medical coverage, infertility causes and the duration of the infertility period. Regarding these factors, we have the following findings. First, women holding a Master’s degree or higher experienced less stigmatization. Donkor et al. also found that tertiary education and higher social status were mediating factors in reducing a woman's perceived stigma [11]. This may be because women with higher educational levels tend to hold relatively stable employment positions and incomes. Their greater access to knowledge and their ability to study, communicate and adjust psychologically may also help them acquire effective treatment measures, relieve themselves from traditional discrimination, and avoid any sense of stigmatization [18, 19].

Second, the employed female patients and patients with high income had a lower sense of stigma. This is probably because these patients tend to devote more time and energy to their careers, recognize ego value, and win respect from others. Thus, work can help distract their attention from infertility.

Third, patients with shorter durations or with medical healthcare insurance had a lower sense of stigmatization. Alhassan and colleagues also pointed out that a longer duration of infertility was positively associated with depression [19]. Due to potential pressure from the surrounding environment and public opinion, a considerable number of infertile women choose to conceal their condition and even refuse to seek medical treatment, which delays their recovery from the disease [8]. Because longer treatment periods or greater numbers of failed treatments cost more money, appropriate medical insurance can effectively alleviate the patients’ financial burdens, thus reducing the degree of stigma.

Fourth, patients with ovulation disorders have the lowest stigma levels, followed by those with tubal infertility. In vitro fertilization for patients with ovulation disorders and tubal infertility, i.e., through embryo transfer, usually has a higher success rate according to data from our reproductive center. In contrast, endometrial and unexplained infertility are more difficult to treat, which explains their higher degree of stigma.

Few studies have been formally conducted on interventions related to stigma among infertile women, but the following approaches have been recommended in the literature [20]. The first approach is professional psychological consultation. Regular consultations can cover medicine as well as daily life, job hunting and other related topics. The consultants must have good insight into the patients’ emotional and psychological changes, understand the patients’ thinking, analyze the causes of stigma, and offer patients with proper psychological guidance and cognitive intervention. During consultation, nurses should play a pivotal role in addressing the stigma of infertility [16]. Both one-on-one and group consultations should be performed because the latter can motivate patient-patient communication and mutual support [20].

The second approach is social support in the community. An important reason for stigma is rejection and discrimination from the outside world and even from relatives and friends. Establishment of a "care-support" education club in the community is recommended [18]. On the one hand, the population can be educated in the club with knowledge of social care, through which the public’s stereotypes can be corrected, and a more tolerant and positive social environment can be created for patients [18]. On the other hand, family members and relatives should be educated to provide patients with more support and care to prevent patients from feeling alienated. This will undoubtedly help alleviate the patients’ stress and improve their self-confidence and self-esteem.

Third, better public medical healthcare should be implemented. The costs of infertility treatment are high because infertility has not yet been covered by medical insurance in most regions of China. Since economic factors are tightly associated with stigma, the establishment of targeted medical insurance plans or expense reimbursement can help patients accept more active interventions, therefore relieving a great burden on patients and their families.

One limitation of the present study is that we only collected data from women who ‘experienced’ stigma, not from others ‘against’ them, which may have caused deviations.

Second, this study did not include stigma against infertile men. The causes of infertility from men and women are roughly half-and-half [21]. In Chinese culture, male factor infertility usually suffers more stigma. Accordingly, infertile men tend to hide the truth, and men who do not know whether they are infertile are not willing to accept physical examination. Thus, infertility tends to be attributed to women by society, regardless of whether women accept it. A lack of investigation of infertile men will aggravate society’s misunderstanding of women with infertility and women’s own suspicion of themselves. This is not good for improving the stigma level of women with infertility.