Abstract
Purpose
A large percentage of side effects and problems associated with diabetes including social stigma interfere with health promotion behaviors in people with diabetes, minimize their social interactions, and indeed prevent them from asking for help regarding treatments and follow-up care services. Therefore, the present study was to elucidate the relationship between perceived social stigma (PSS) and diabetes self-care (DSC) activities in Iranian participants with type 1 diabetes (T1D).
Methods
This correlational study was fulfilled on 135 participants with T1D in the city of Tabriz, Iran, selected through the convenience sampling method. The data were collected via the Demographic and Clinical Data Collection Form, the Type 1 Diabetes Stigma Assessment Scale (DSAS-1), and the Summary of Diabetes Self-Care Activities Questionnaire (SDSCAQ). The data were analyzed using the SPSS Statistics software (Version 16) incorporating descriptive and analytical statistics.
Results
The results revealed that the total score mean of PSS in the study participants was 51.43±12.16, which was at a moderate level. As well, the mean score of the DSC activities was 37.93±11.26. As a whole, no significant relationship was observed between the PSS and the DSC activities.
Conclusion
According to the study findings, the PSS was not significantly correlated with the DSC activities; however, both variables in most study participants were at moderate levels. Therefore, further studies on the factors associated with the social stigma of diabetes are necessary. Knowing these factors can help treatment team plan to reduce the diabetes stigma and improve people with diabetes' self-care.
Keywords: Type 1 Diabetes, Social Stigma, Self-Care
Introduction
Type 1 diabetes (T1D) is induced by damage to β-cells secreting insulin in the pancreas, which typically gives rise to an absolute deficiency of insulin [1]. Approximately 463 million adults (20–79 years) were living with diabetes in 2019; by 2045 this will rise to 700 million. Around 10% of all people with diabetes have TID (https://idf.org/aboutdiabetes/what-is-diabetes/facts-figures.html).
People with diabetes’ knowledge about diabetes, their attitudes towards self-management, and self-management skills, together with lifestyle choices, are central to achieving and maintaining glycemic control, both in the short term and long term [2]. As young people with T1D grow up, they are required to accept responsibility for their disease self-management [3].
On the other hand, the nature of diabetes and its complications can result in social and psychological problems in people with diabetes. Some factors such as limitations in dietary habits and physical activities, need for constant treatment and care, restrictions on family formation, the need for insulin injection, and diabetes complications are effective in causing these problems in people with T1D [4]. Together with these factors, social stigma because of shame, fear, and low self-confidence is one of the challenges frustrating people with diabetes, which extremely disturbs their interactions and social roles [5]. Meanwhile, T1D development can cause behavioral, familial, and work-related problems [6].
Stigma is an inner sense of shame about having an unwanted situation, along with fear of discrimination due to inferiority or inadmissibility [7]. Stigma depends on the culture of each society. For example, there may be a belief that the current illness is the result of poor lifestyle or a punishment for current or past life misconduct. Consequently, people with diabetes may feel shame for their medical conditions, and weaken their social standing in the community. It may even lead to self-blame, social isolation, as well as shame and guilt [8]. The term social stigma in diabetes also denotes negative experiences such as deprivation, rejection, or blame for having diabetes. Some known social characteristics of diabetes such as insulin injection, blood sugar control, nutritional limitations, obesity, and hypoglycemia also contribute to the experiences concerning diabetes stigma [5].
Social and psychological consequences of social stigma can adversely affect the process of care such as health behaviors, acceptance of treatment, as well as adherence to treatment and disease control. This reduces the quality of interactions between people with diabetes and caregivers, because people with diabetes suffering from stigma are always ready to discontinue their treatments to prevent information disclosure [9]. Thus, people with diabetes not only face the challenges of their illness; but also they miss out on many educational and job opportunities, access to health care, and community interaction due to stigma [10]. According to Ciftci et al. (2013), despite the fact that Islamic culture has a positive and welcoming view about physical and mental diseases, and reasons such as divine testing, destiny, etc. are considered to justify them; But social stigmas are still an important and influential factor [11].
Therefore, as much as diabetes causes physical complications in people with diabetes, it also has psychological complications [2], which unfortunately have been neglected in Iranian society. Hence, a study identifying psychological complications of diabetes especially social stigma and its related factors can be worthwhile. On the other hand, it should be noted that beliefs, perceptions and experiences related to the diabetes stigma can be widely influenced by society and culture. Therefore, the present study aimed to determine the relationship between perceived social stigma (PSS) and diabetes self-care (DSC) activities in participants with T1D.
Methods
This correlational study was conducted on 135 participants with T1D, referring to health care centers and the Office for Iranian Diabetes Society in the city of Tabriz, Iran, in 2018. Sampling was performed by the convenience sampling method and according to the inclusion criteria. The participants aged 18–40 years and diagnosed with T1D, at least three months before commencement of data collection, with ability to read and speak Persian, without any diagnosis of psychosis and showing willingness to participate in this study were included.
The minimum number of participants required was determined by an a priori power analysis (Gpower: Faul and Erfelder 1992). The effect size (ES) in this study was 0.25, considered to be small using Cohen's (1988) criteria [12]. With an alpha = 0.05 and power = 0.80, the projected sample size needed with this effect size (GPower 3.1) is approximately N = 123. Allowing for 10% Loss of data and attrition, 135 participants are required.
The data were collected via the Demographic and Clinical Data Collection Form, the Type 1 Diabetes Stigma Assessment Scale (DSAS-1), and the Summary of Diabetes Self-Care Activities Questionnaire (SDSCAQ).
The Demographic and Clinical Data Collection Form included items such as gender, age, marital status, level of education, place of residence, occupation, diabetes duration, family history of diabetes and other disease and the amount of glycosylated hemoglobin recorded in the their medical records.
The DSAS-1, developed by Browne et al. (2017), was comprised of 19 items to measure the rate of PSS in those having T1D aged 18 and above. The internal reliability of this questionnaire had been evaluated through the Cronbach’s alpha coefficient of 93% and its validity had been investigated by Spearman rank correlation coefficient. Its scoring method was also of Likert-type scale (1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree, and 5 = strongly agree), ranged from 19 to 95. Accordingly, greater scores represented higher PSS [13]. Since this questionnaire had not been already practiced in Persian studies, it was translated at first into Persian. Then, it was translated into English once again by two professional English translators, and finally compared with the original version. The final version was consequently confirmed by the faculty members of the School of Nursing and Midwifery at Islamic Azad University (IAU), Isfahan (Khorasgan) Branch, Isfahan, Iran. To examine its content validity, the questionnaire was further submitted to 10 faculty members of the School of Nursing and Midwifery at IAU, Isfahan (Khorasgan) Branch, Isfahan, Iran, and their comments were included. The reliability of the given questionnaire was examined through Cronbach’s alpha coefficient of 89% suggesting that it was highly reliable.
The SDSCAQ was employed to determine the volume of DSC activities during the past seven days in a self-report manner. This questionnaire contained different dimensions including diet, blood sugar testing (namely, self-test), exercise, foot care, and smoking [14]. In this scale, diet (4 questions), exercise (2 questions), blood sugar testing (2 questions) and foot care (2 questions) are measured. Each behavior is given a score from zero to seven. The total score is obtained from the sum of the scores of each question. The question related to smoking should be answered separately, and only with a yes or no answer. It should be noted that the item related to smoking was removed from the questionnaire during data analysis since none of the participants had used to smoke. The validity and reliability of this scale had been confirmed in different studies. In Iran, the Cronbach’s alpha coefficient of the given questionnaire had been reported as 80% in the study by Shabibi et al. (2016), indicating the acceptable internal consistency of this tool [15]. The content validity of this scale was also examined and confirmed in this study by 10 faculty members at the School of Nursing and Midwifery at IAU, Isfahan (Khorasgan) Branch, Isfahan, Iran.
To fulfill this study, the researchers referred to the health care centers upon receiving permission from the Vice Chancellor’s Office for Research at IAU, Isfahan (Khorasgan) Branch, Isfahan, Iran, and the relevant officials. Then, 135 of participants meeting the inclusion criteria in this study were invited to participate in the study. The questionnaires were subsequently completed under the supervision of the researchers, by the study participants themselves, as well as through taking notes of the information in the participants’ medical records, especially for the clinical data.
This study was derived from a Master’s Thesis in Nursing under the ethics code of IR.IAU.KHUISF.REC.1397.148, confirmed by the Vice Chancellor’s Office for Research at IAU, Isfahan (Khorasgan) Branch, Isfahan, Iran. To adhere to the ethical considerations, the researchers described the study objectives to the participants and an informed consent was consequently acquired. As well, the participants’ information was kept confidential and they were assured that they could withdraw from the study at any time they desired.
The data were analyzed using the SPSS Statistics software (version 16). The descriptive data were accordingly presented in terms of number, percentage, mean, and standard deviation (SD). Pearson’s correlation coefficient test was also utilized to examine the relationship between the PSS and the DSC activities.
Results
A total number of 135 participants with T1D were studied. Response rate was 100%. The demographic and clinical characteristics of the study participants are presented in Table 1.
Table 1.
Demographic and clinical characteristics of study participants (n = 135)
| Variables | Groups | No. (%) |
|---|---|---|
| Gender | Female | 57 (42.2) |
| Male | 78 (57.8) | |
| Age (years) | Female | 25.42 (7.34)*** |
| Male | 26.84 (7.17)*** | |
| Overall | 26.02 (7.27)*** | |
| Marital status | Single | 86 (63.7) |
| Married | 48 (35.6) | |
| Divorced | 1 (0.7) | |
| Level of education | Under high school diploma | 35 (25.9) |
| High school diploma | 68 (50.4) | |
| Above high school diploma | 32 (23.7) | |
| Place of residence | Urban | 108 (80.0) |
| Rural | 27 (20.0) | |
| Occupation | Unemployed | 35 (25.9) |
| Employed | 44 (32.6) | |
| Student | 56 (41.5) | |
| Diabetes duration (years)* | Female | 12.17 (6.28)*** |
| Male | 13.58 (6.34)*** | |
| Overall | 12.77 (6.32)*** | |
| Family history of diabetes | Yes | 43 (31.9) |
| Other diseases** | Yes | 28 (20.7) |
| Glycosylated hemoglobin (GH) | –– | 8.27 (5.48)*** |
*The minimum duration of diabetes in the participants was two years
**Cardiac, Blood pressure, Kidney, Eye
***Mean (SD)
The mean score of the DSC activities is illustrated in Table 2. Accordingly, as reported in Table 2, the total mean score of the DSC activities in the study participants was 37.93±11.26.
Table 2.
Mean score of DSC activities components in study participants (n = 135)
| DSC activities components | Range of possible scores | Min score achieved | Max score achieved | Mean | SD |
|---|---|---|---|---|---|
| Diet | 0–28 | 4.00 | 26.00 | 17.25 | 3.76 |
| Exercise | 0–14 | 0.00 | 14.00 | 5.82 | 3.31 |
| Blood sugar testing | 0–14 | 0.00 | 14.00 | 8.15 | 4.47 |
| Foot care | 0–14 | 0.00 | 14.00 | 6.70 | 4.79 |
| DSC | 0–70 | 5.00 | 60.00 | 37.93 | 11.26 |
In Table 3, the scores of social stigma were provided in different dimensions. In this respect, the total score of PSS in the participants is in the range of 19 to 73. Also the total score mean of PSS in the study participants was 51.43±12.16.
Table 3.
Mean score of PSS in study participants (n = 135)
| Dimensions | Range of possible scores | Min score achieved | Max score achieved | Mean | SD |
|---|---|---|---|---|---|
| Treated Differently | 6–30 | 6.00 | 20.00 | 11.83 | 3.91 |
| Blame and Judgement | 6–30 | 6.00 | 28.00 | 18.04 | 5.35 |
| Identity Concerns | 7–35 | 7.00 | 35.00 | 21.56 | 5.36 |
| PSS | 19–95 | 19.00 | 73.00 | 51.43 | 12.16 |
Other study findings are shown in Table 4. According to the Pearson’s correlation coefficient test results, no significant relationship was observed between the PSS and the DSC activities (r = -0.043, p > 0.05). Similarly, the PSS in the study participants was not significantly correlated with different dimensions of the DSC activities (p > 0.05). The results of the Pearson correlation coefficients also showed no significant relationship between the DSC activities and the PSS dimensions (p > 0.05).
Table 4.
Relationship between PSS and DSC activities in study participants
| PSS | Treated Differently | Blame and Judgement | Identity Concerns | PSS | ||||
|---|---|---|---|---|---|---|---|---|
| Correlation coefficient | P-value | Correlation coefficient | P-value | Correlation coefficient | P-value | Correlation coefficient | P-value | |
| DSC activities | ||||||||
| Diet | -0.081 | 0.349 | 0.024 | 0.786 | 0.112 | 0.196 | 0.034 | 0.700 |
| Exercise | 0.101 | 0.242 | -0.064 | 0.460 | 0.075 | 0.387 | 0.038 | 0.666 |
| Blood sugar testing | -0.081 | 0.834 | 0.057 | 0.508 | -0.052 | 0.546 | -0.054 | 0.533 |
| Foot care | 009 | 0.915 | -0.136 | 0.116 | -0.107 | 0.218 | -0.104 | 0.231 |
| DSC | 0.001 | 0.994 | -0.092 | 0.290 | -0.007 | 0.938 | -0.043 | 0.616 |
According to the Spearman correlation coefficient test, a direct and significant relationship was observed between the amount of glycosylated hemoglobin and the amount of social stigma in participants (r = 0.169, P = 0.05). So that with increasing the amount of glycosylated hemoglobin, the social stigma value in participants was higher.
To investigate the simultaneous relationship between social stigma and demographic and clinical characteristics such as gender, age, marital status, educational level, occupational status, duration of diabetes, family history of diabetes, other diseases, body mass index and glycosylated hemoglobin level with DSC activities, multivariate regression model was used. The results of ANOVA did not confirm the significance of the model (F (11.118) = 1.112, P = 0.358).
Discussion
The results revealed that the total mean score of the PSS in the study participants was 51.43±12.16. Given the fact that the possible mean score was 57, these results indicated that the PSS was at a moderate level. In line with the results of this study, Holmes-Truscott et al. (2020) showed that diabetes stigma total mean score in participants with T1D is 52.9 ± 15.6 [16]. Also, the findings reported by Liu et al. (2017) had demonstrated that most of the participants (76% of people with T1D and 52% of people with T2D diabetes) had the PSS symptoms. Besides, the participants with T1D had felt more stigma compared with those with T2D and they had strongly agreed that others’ ideas could make them feel ashamed, guilty, blamed, and isolated [5]. In another survey by Gerdig and Bartelsen (2017), reflecting on the effects of stigma on the quality of life of participants with diabetes, stigma had been taken into account as a reality among them and most of these participants had felt ashamed [17]. Also, in study by Olesen et al. (2017) in Denmark, researchers reported that 23% of the participants had not disclosed their T2D status to their current employer due to stigma [18].
It is noteworthy that, people with diabetes perceive stigma more because of some factors such as need for insulin injection and constant blood sugar monitoring that is visible for others. In addition, some people think that these people are responsible for their disease because of eating too many sweets and not being active or being lazy [5].
According to the other results of this study, the DSC activities in most study participants were at moderate level. Also, the mean score of glycosylated hemoglobin was 8.27 ± 5.48.
Corresponding to the study results, the findings of the investigations by Vasli and Eshghbaz (2009) and Khezerloo and Feizi (2012) had verified that self-care activities in most participants were at a moderate level [19, 20]. In the study by Rajasekharan et al. (2015), the practice of DSC activities was unsatisfactory in almost all dimensions except for blood sugar monitoring and adherence to treatments [21]. Self-care practices are the most fundamental methods for treatment and control of diabetes side effects as well as enhancement of quality of life, which eventually make reduction of treatment costs possible [22]. Therefore, effective and comprehensive efforts need to be made by treatment teams, particularly nurses, to provide support for training people with diabetes. It is accordingly essential to raise people with diabetes’ levels of awareness and to broaden their knowledge about potential side effects and hazards of poor glycemic control, necessity of correction in diets and lifestyles, as well as taking actions towards a proper diabetes control.
The results of this study showed no significant relationship between the PSS and the DSC activities in participants with T1D (p > 0.05). But there was a significant relationship between perceived social stigma score and levels of glycosylated hemoglobin in a way that with increasing the amount of glycosylated hemoglobin, the social stigma value in participants was higher. Therefore, according to the fact that the final goal of self-care programs is achieving the favorable level of glycosylated hemoglobin [23], it can be claimed that the existence of social stigma can result in reducing the participants’ tendency to adherence treatment and care recommendations.
Kato et al. (2016), establishing the relationship between self-related stigma and the DSC activities in participants with T2D had simply provided evidence for a significantly negative relationship between the PSS and the DSC activities, which was not in line with the results of the present study [24]. Accordingly, differences in data collection tools focused on participants’ DSC behaviors could be the reason for a discrepancy of the results in both studies. In the survey by Kato et al. (2016), a specific questionnaire related to the DSC activities had not been administered. However, in this study like our study, the results showed that the self-related stigma in diabetic participants with higher level of glycosylated hemoglobin was higher. They had further stated that negative experiences about T2D could affect the participants’ self-esteem, attitudes towards social participation, and as a result self-related stigma. Social stigma in turn could give rise to no tendency towards complying with care and treatment recommendations as well as encountering conflicts in their social roles. In another study by Kato et al. (2020), findings showed that self- stigma in participants with T2D had a direct effect on their activation and also had an indirect effect on participants’ activation via lower self-esteem and self-efficacy [25].
In the study of Puhl et al. (2020), diabetes self-stigma was associated with lower diabetes self-management in participants with T2D [26]. Moreover, Lee et al. (2015) in their study to determine the relationship between diabetes stigma and related factors in diabetic participants in Singapore concluded that there is a significant relationship between stigma and glycosylated hemoglobin [27].
Likewise, the results of the study by Jaacks et al. (2015) had confirmed that stigma was a significant barrier to boosting care quality in T1D participants in China. In other words, shame, fear, and sense of guilt resulting from stigma could interfere with participants’ health behaviors and even use of insulin pumps and daily injections at school or at work [28].
In this regard, Kato et al. (2017) in Japan, reported that participants who had not disclosed their diabetes status to their employers at work, were significantly associated with no insulin injection therapy compared to those who had disclosed their status [29]. Soylar et al. (2020) in Turkey found that negative social stigma related to Insulin injection therapy affected participants’ decision to start insulin [30].
But the results of Holmes-Truscott et al. study (2020) showed that associations between DSAS and SDSCA and HbA1c were no meaningful. The authors stated that the summary self-report DSCA may not enough a comprehensive and sensitive tool to detect the association between self-care behaviors and diabetes stigma. Also, the cross-sectional nature of the study may be causing the lack of a clinically meaningful relationship between diabetes stigma and HbA1c [16].
Among the limitations of this study, small sample size could be underlined, which might cause reduction in generalizability. Also, due to the fact that the diabetes stigma can be widely influenced by society and culture, the results of our study cannot be generalized to people with T1D in other countries. As well, since the data collection was performed through questionnaires and the study findings were based on the participants’ responses, accuracy reduction in terms of responding with different reasons such as worry along with time and place conditions was probable. However, there were attempts to provide appropriate conditions at the time of responding to the items in order to control this limitation to some extent.
According to the results of this study, no significant relationship was observed between the PSS and the DSC activities in Iranian participants with T1D in the city of Tabriz. Nevertheless, the DSC activities and the PSS in the bulk of the participants were at a moderate level. According to the authors, further studies on the factors associated with the social stigma of diabetes are necessary. Knowing these factors can help treatment team plan to reduce the diabetes stigma and improve people with diabetes' self-care.
Acknowledgements
The authors of this article appreciate the Research Deputy of Islamic Azad University, Isfahan (Khorasgan) Branch, all dear participants as well as the respectable personnel of Tabriz Health Center who helped us in conducting this study.
Funding
This study was supported by the vice chancellor for research at Islamic Azad University, Isfahan (Khorasgan) Branch.
Data availability
Not applicable.
Code availability
Not applicable.
Declarations
Conflicts of interest
Nothing to declare.
Footnotes
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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