The relationship between perceived stigma and health-promoting self-care in adult patients with type 2 diabetes

Abstract

Objectives

The study was conducted to examine the relationship between perceived self-stigma and health promotion self-care in patients with type 2 diabetes.

Methods

The study was conducted with 206 patients with type 2 diabetes who were hospitalized in the endocrinology clinic of a state hospital between July and September 2023 and met the study inclusion criteria. Data were collected using a patient identification form, the Type 2 Diabetes Stigma Assessment Scale (DSAS-2) and the Diabetes Health Promotion Self-Care Scale (DHPSC). Data were analyzed using SPSS Statistical software (Version 22), which combines descriptive and analytical statistics.

Results

The participants’ DSAS-2 and DHPSC total mean scores were 47.85 ± 17.81 and 87.83 ± 19.19, respectively. A moderate, negative and statistically significant relationship was found between the participants’ DSAS-2 and DHPSC total mean scores (r: 0.467, p:0.000), suggesting that health-promotion self-care is a predictor of perceived stigma.

Conclusion

The study revealed that the patients with type 2 diabetes experienced moderate levels of stigma, and as the level of perceived stigma increased, their self-care behaviors were negatively affected.

Introduction

Diabetes Mellitus (DM) is a global health issue rapidly increasing in prevalence, threatening the entire world. According to the International Diabetes Federation (IDF) data, there were 537 million diabetics worldwide in 2021, and this number is estimated to reach approximately 643 million by 2030 [1, 2]. According to the Turkey Diabetes Epidemiology Study (TURDEP-II), the number of diabetic patients is anticipated to continue to rise across the world [3]. Individuals diagnosed with diabetes are exposed to various psychosocial problems in daily life along with the physical effects of diabetes. It is not easy for individuals diagnosed with diabetes to know they have a chronic disease and adjust their lifestyle accordingly. Additionally, the sense of stigma experienced by those individuals from people around them further complicates this situation [4].

Stigmatization in diabetes is a significant yet often overlooked issue [5]. Stigma is an internal sense of shame stemming from feelings of inferiority or unacceptability, as well as fear of discrimination, due to having an undesirable condition [5–7]. Stigmatization in diabetes manifests as negative emotions such as self-blame, worthlessness, shame, and exclusion experienced by individuals labeled as diabetics in order to distinguish themselves from others. Diverse factors such as insulin injections, blood sugar control, dietary restrictions, obesity, and hypoglycemia contribute to the perception of diabetes stigma [1, 7, 8]. The International Diabetes Federation defines stigma in diabetes as an issue requiring urgent intervention [9, 10].

A multinational study reported that one in five diabetic patients (19.2%) experienced discrimination [11]. Another study about the psychosocial consequences of stigma revealed that diabetic individuals experienced feelings of depression, fear, blame, guilt, anxiety, and low self-esteem [12]. Feeling stigmatized can directly affect diabetes management, hinder diabetes patients from using recommended treatments, impede their adoption of treatment processes, and lead to complications associated with diabetes [13, 14].

Stigma is considered one of the barriers to self-care, self-management, and health improvement in diabetic patients [1, 8]. A systematic review reported that diabetes-related stigma adversely affects clinical, psychological, and behavioral outcomes in patients with type 2 diabetes [15]. Furthermore, this condition associated with diabetes is indicated to hinder patients in improving and managing their health effectively [1, 8, 16].

Health promotion is crucial for managing diabetes, as it is for managing all diseases. The primary goal of DM treatment is to achieve effective management of diabetes, ensure metabolic control, and prevent complications. DM management involves appropriate nutrition, regular exercise, foot care, blood sugar monitoring, appropriate use of oral antidiabetic medications, correct insulin administration, adherence to lifelong medication, and regular health check-ups [17, 18]. Maintaining blood glucose levels and preventing acute and chronic complications are possible only through health-promotion self-care behaviors. For patients with type 2 diabetes, managing self-care behaviors and identifying factors influencing these behaviors are essential to optimize treatment outcomes [18, 19].

While numerous studies in Turkey’s literature have investigated factors related to self-care behaviors, there are limited studies examining stigma in diabetic patients and the relationship between stigma and self-care. Considering the impact of stigma on self-care, this study will contribute to filling the gap in Turkey’s literature and provide guidance in patient care. In this context, the study aims to examine the relationship between perceived self-stigma and health-promotion self-care behaviors in patients with type 2 diabetes.

Methods

Study design

The study was designed as a descriptive and correlational study.

Population and sample of the research

The study was conducted at the endocrinology clinic of a state hospital between July and September 2023. The sample size was calculated using the PASS (Power Analysis and Sample Size) 11 Statistical Analysis Software (NCSS LLC, Kaysville, Utah, USA). With an alpha (α) of 0.05, beta (β) of 0.20, and 1-β of 0.80, the minimum sample size was calculated to be n = 196. To reach the minimum sample size, patients diagnosed with Type 2 DM according to the International Classification of Diseases (ICD-10), hospitalized during the specified dates, and meeting the inclusion criteria were included in the study. The inclusion criteria were as follows: being diagnosed with Type 2 DM for at least 1 year, being over 18 years of age, being literate, and agreeing to participate in the study. The exclusion criteria were as follows: having a diagnosis of Type 1 DM, having a diagnosis of mental illness, having dementia or any other organic mental disorder, having neurological illness and intellectual disabilities that affected individuals’ cognitive functions. Taking into account possible data loss to reach the sample size, the study was conducted with a total of 206 patients were selected through systematic sampling.

Data collection tools

The data were collected using a patient identification form, the Type 2 Diabetes Stigma Assessment Scale (DSAS-2) and the Diabetes Health Promotion Self-Care Scale (DHPSC).

The Patient Identification Form consisted of 15 questions about the participants’ sociodemographic characteristics such as age, gender, marital status, and disease-related characteristics.

The Type 2 Diabetes Stigma Assessment Scale (DSAS-2) was developed by Browne et al. and is a self-report scale to assess perceived and experienced stigma in adults with Type 2 diabetes [9]. Its Turkish validity and reliability study was conducted by Can Gür et al. This scale consists of 19 items and three subscales: different behaviors (6 items), blame and judgment (7 items) and self-stigmatization (6 items). The total score of the scale ranges from 19 to 95 points and higher scores indicate higher levels of stigmatization [4]. The Cronbach’s alpha coefficient of the scale was determined as 0.92 in the validity study and 0.96 in this study.

The Diabetes Health Promotion Self-Care Scale (DHPSC) was developed by Wang et al. in 2012 [20]. Its Turkish reliability and validity study was conducted by Peker Karatoprak et al., reporting the Cronbach’s alpha reliability coefficient as 0.92 [21] This is a 28-item scale with seven behavioral dimensions: diet, exercise, self-monitoring of blood glucose, adherence to recommended regimen, foot care, interpersonal and personal health responsibility. The scale has a 5-point Likert type scoring, ranging from “always” (5 points) to “never” (1 point). Higher scores indicate better health care behaviors. In this study, the Cronbach’s alpha coefficient of the scale was found as 0.95.

Data analysis

The data were analysed by using the SPSS 22.0 software (SPSS, Inc., Chicago, IL, USA). The comparison of the variables that were normally distributed according to Kolmogorov-Smirnov test was performed using t-test and one-way analysis of variance (ANOVA) (Tukey’s-b test as a post-hoc comparison). To determine the relationship between stigma and Health Promoting Self-Care level, Pearson’s correlation analysis was utilised. Multivariate linear regression analysis was used for the variables predicting the patients’ stigma. A 95% confidence interval was accepted. The statistically significant level was accepted as p < 0.05.

Ethical considerations

Before starting the study, an ethics committee approval was obtained from the Non-Interventional Scientific Research Ethics Committee (Decision no: 2023-06/63) and an institutional permission from the hospital where the study would be conducted. Written and verbal consent was obtained from the participants after they were provided with necessary information. In addition, the participants were informed that their information would be used only for this scientific study and kept confidential.

Results

The mean age of the participants was 49.35 ± 14.33 years; and of them 55.1% were female, 66.5% were married, 35.9% were literate, 55.3% were unemployed and more than half (63.1%) lived in the city center. Considering their disease-specific data, 49.0% of the patients had diabetes for 1–5 years, 58.8% used oral antidiabetic drugs and insulin for treatment, and almost the majority (83.5%) received education about diabetes (Table 1).

Table 1.

Descriptive characteristics of the participants (n:206)

Characteristics n %
Gender
Women	106	51.5
Men	100	48.5
Age
< 40 years	65	31.4
40–50 years	49	23.8
> 50 years	92	44.8
Mean age ( x ± SS)	49.35 ± 14.33 (24–79)
Marital status
Married	137	66.5
Single	69	33.5
Education level
Illiterate	37	18.0
Literate	74	35.9
Primary school	64	31.1
High school and higher	31	15.0
Employment status
Employed	92	44.7
Unemployed	114	55.3
Place of residence
City center	130	63.1
District	56	27.2
Village	20	9.7
Duration of disease
1–5 years	101	49.0
6–10 years	56	27.2
> 10 years	49	23.8
Type of treatment
Diet	11	5.3
Oral antidiabetic	74	35.9
Oral antidiabetic ve insulin	121	58.8
Receiving information on DM
Yes	172	83.5
No	34	16.5

The participants’ DSAS-2 total mean score was 47.85 ± 17.81, and their DSAS-2 subscale mean scores were 15.83 ± 6.01 for different behaviors, 17.62 ± 6.14 for blame and judgment and 14.40 ± 6.45 for self-stigmatization. In addition, the participants’ DHPSC total mean score was 87.83 ± 19.19 (Table 2).

Table 2.

Participants’ mean total and subscale scores of DSSA-2 and DHPSC

Scales	Score Ranges				SS
Type-2 Diabetes Stigma Assessment Scale	19–85		47.85		17.81
Treated differently domain	6–30		15.83		6.01
Blame and judgment	6–30		17.62		6.14
Self-stigma	7–15		14.40		6.45
Diabetes Health Promotion Self-Care Scale	28–140		87.83		19.19

Abbreviation: DSSA-2, Type-2 Diabetes Stigma Assessment Scale; DHPSC, Diabetes Health Promotion Self-Care Scale

Table 3 shows the participants’ DSAS-2 and DHPSC mean scores according to descriptive characteristics. The DSAS-2 mean scores were significantly lower in the patients who had high school and higher education (p:0.000), had been diagnosed with diabetes for 1–5 years (p:0.003), did not use oral antidiabetics or insulin, and only made dietary adjustments (p:0.002). However, the DHPSC mean scores were significantly higher in patients who were female (p:0.005), under 40 years of age (p:0.000), married (p:0.000), had high school or higher education level (p:0.000), had been diagnosed with diabetes for 1–5 years, and made only dietary adjustments (p:0.008).

Table 3.

Comparison of the mean total scores of DSSA-2 and DHPSC according to descriptive characteristics

Characteristics	DSSA-2	DHPSC
Gender
Women	49.07 ± 17.30	91.46 ± 19.72
Men	49.57 ± 18.34	83.98 ± 17.92
Test (t/p)	1.009/0.314	2.843/0.005
Age
< 40 years	45.06 ± 16.52	94.66 ± 17.08
40–50 years	46.42 ± 16.99	90.59 ± 17.69
> 50 years	50.59 ± 18.88	81.53 ± 19.55
Test (F/p)	2.0670.129	10.453/0.000
Marital status
Married	46.94 ± 17.59	91.11 ± 18.65
Single	49.68 ± 18.24	81.30 ± 18.71
Test (t/p)	1.042/0.299	3.559/0.000
Education level
Illiterate	53.86 ± 17.76	78.97 ± 18.41
Literate	49.95 ± 18.76	83.86 ± 13.30
Primary school	46.68 ± 15.94	92.85 ± 18.50
High school and higher	38.09 ± 13.19	97.48 ± 17.09
Test (F/p)	5.245/0.000	8.617/0.000
Duration of disease
1–5 years	43.64 ± 17.41	96.45 ± 18.43
6–10 years	52.19 ± 17.82	80.35 ± 18.17
> 10 years	51.59 ± 16.92	78.59 ± 13.36
Test (F/p)	5.823/0.003	24.768/0.000
Type of treatment
Diet	32.36 ± 12.76	100.27 ± 15.72
Oral antidiabetic	45.91 ± 16.80	90.93 ± 15.84
Oral antidiabetic ve insulin	50.45 ± 18.05	84.80 ± 20.66
Test (t/p)	6.180/0.002	4.966/0.008

Abbreviation: DSSA-2, Type-2 Diabetes Stigma Assessment Scale; DHPSC, Diabetes Health Promotion Self-Care Scale

A moderate, negative and statistically significant relationship was found between the participants’ DSAS-2 and DHPSC total scores (r:0.467, p:0.000) (Table 4).

Table 4.

The correlation between participants’ DSSA-2 and DHPSC scores

	Type-2 Diabetes Stigma Assessment Scale
	r	p
Diabetes Health Promotion Self-Care Scale	− 0.467	0.000

r, Pearson Correlation analysis

Table 5 presents the results of the regression analysis regarding the stigmatization levels of the participants. In multivariate regression analyses, potentially influential factors showing a statistically significant relationship were selected through t-test, ANOVA or correlation analysis. Accordingly, the participants’ health-promotion self-care levels were significantly affected their perceptions of stigmatization (R = 0.333, R2 = 0.111, F = 4.977, p = 0.000), explaining 11% of the total variance. On the other hand, the variables of educational status, duration of illness, and type of treatment could not explain the stigmatization score at a significant level.

Table 5.

Predictive factors of Stigma

Variables	B (95% CI)	SE	β	t	p
Constant	62.507	10.144	-	6.162	0.000
Education status	-1.689	1.087	-0.134	-1.553	0.122
Duration of illness	-0,138	0.219	-0.059	-0.632	0.528
Treatment type	1.910	1.371	0.115	1.394	0.165
DHPSC	-0.181	0.069	-0.195	-2.632	0.009
R = 0.333, R2 = 0.111, Adjusted R2 = 0.088, F= 4.977 p = < 0.001

Abbreviation: Adj. R2: Adjusted R square; B: Partial regression coefficient; β: Standard partial regression coefficient;95% CI: 95% confidence interval

DHPSC, Diabetes Health Promotion Self-Care Scale

Discussion

Stigma affects the adaptation process to the disease in diabetes, as it does in other chronic illnesses. In the literature, studies have reported that patients gradually lose their dietary patterns, do not adhere to their diets, neglect their treatments, especially insulin users develop common concerns about insulin injection, experience social embarrassment, fear social rejection, anticipate different approaches, or fear damage to their relationships with others in order to be able to adapt to their social environment and avoid exclusion. In this context, many international diabetes organizations have emphasized the importance of stigma in diabetes and called for attention to be drawn to this issue [1, 22, 23].

This study aimed to determine stigma perception in individuals with Type 2 diabetes, and found that the participants perceived a moderate level of stigma, considering their DSAS-2 scores (47.85 ± 17.81). In a study conducted in our country where the validity and reliability analysis of the scale was performed, the DSAS-2 mean score was determined as 47.60 ± 13.48 [4]. Alzubaidi et al. reported the DSAS-2 total mean score as 41.0 ± 15.9, while Browne et al. reported the mean score as 43.55 ± 13.95 [9, 22]. The results obtained are close to each other. This consistency in results can be explained by the commonality of treatment protocols for many patients, as well as the similarity in societal perceptions of the disease and attitudes toward its effects.

A study conducted with individuals with Type 2 diabetes has reported that more than half of the participants experienced stigma during the course of their illness [13]. Eitel et al. reported that 52% of individuals with Type 2 diabetes and 76% of those with Type 1 diabetes experienced stigma due to their diabetes, affecting their emotional and social lives [23]. Various studies have indicated that stigma is prevalent in all patients, regardless of whether they have Type 1 or Type 2 diabetes, emphasizing the need for significant attention to this issue [6, 10, 16, 24]. Additionally, Olesen et al. found that 23% of participants did not disclose their diabetes to their current employers due to stigma [25]. Taken together, these results suggest that stigma related to diabetes is common among individuals with diabetes and underscores the importance of addressing patients in this regard.

In the study, the DSAS-2 mean scores were significantly lower in patients who had completed high school education or higher, diagnosed with diabetes for 1–5 years, and managed their condition through dietary adjustments without using oral antidiabetic drugs or insulin (p < 0.05). Liu et al. identified having a bachelor’s or professional degree as a significant factor in the perception of stigma related to diabetes, regardless of the type of diabetes [13]. Individuals with higher levels of education may be more significantly affected by the consequences of the disease due to their increased presence in social and societal settings. The same study also found that patients with either Type 1 or Type 2 diabetes who were on insulin therapy experienced more stigma, and the perception of stigma increased with the intensity of treatment. Similarly, Eitel et al. demonstrated that insulin use was a determinant of stigma perception, and stigma was influenced by HbA1c levels and the development of diabetes-related complications [23]. Soylar et al. identified reluctance to initiate insulin therapy among participants due to negative social stigma associated with insulin injection therapy [26]. This reluctance may stem from the perception that insulin injection is associated with illicit drug use or indicates a more severe or sicker condition [8, 10]. Indeed, a study about the impact of stigma on insulin therapy found that patients’ fear of appearing different from their peers and their fear of social exclusion cause them avoid using insulin in society [4, 27].

Diabetes is a chronic disease and requires continuous self-management of the patient to manage blood glucose and prevent complications [13]. Self-care in individuals with diabetes includes diverse activities such as healthy eating, regular physical activity, foot care, medication adherence, and self-monitoring of blood glucose, therefore the assessment of these care skills in diabetes patients is crucial [28]. In the study, the patients’ DHPSC mean score (87.83 ± 19.19) was above the average. Similar studies conducted in Turkey have also reported the self-care mean score of diabetes patients above the average [29–31]. Alhaik et al. and Mahdilouy and Ziaeirad determined that the diabetes self-care behaviors of the patients included in the study were at a moderate level [7, 19]. Self-care practices are the most basic methods in the treatment and control of the side effects of diabetes, improving quality of life and ultimately reducing treatment costs. Therefore, treatment teams, especially nurses, should carry out effective and comprehensive studies to support the education of individuals with diabetes [7, 29, 32].

In the study, the DHPSC mean scores were significantly higher in female patients. This result is supported by those of Karakurt et al. Similar studies with diabetic patients have found that male patients had higher levels of self-care [33, 34]. In addition, education level is an important factor in improving self-care behaviors. In the study group, the DHPSC mean scores were significantly higher in patients with a high school education or higher. This results is consistent with those from studies conducted with diabetic patients [31, 33, 34]. Considering the literature and the data obtained in our study, it is expected that patients with higher education levels would have an easier understanding of self-care behaviors and skills, be more capable of implementing them, and exhibit greater adherence to the disease [31].

Another variable affecting the level of health-promotion self-care is the type of treatment administered for diabetes. In the study, the DHPSC mean scores were significantly lower in patients using insulin. It has been determined that patients using insulin often neglect self-care behaviors such as delaying or skipping insulin injections to prevent discrimination, not adhering to the diet when eating with others, and discontinuing blood sugar monitoring outside the home [1, 35]. Studies conducted in Turkey have also found that patients using only oral antidiabetic drugs had higher self-care power than those using insulin [31, 36].

The present study found a statistically significant moderate, negative correlation between the participants’ DSAS-2 and DHPSC total scores. This result indicates that stigma affects self-care behaviors. Studies on the subject have indicated that self-stigmatization negatively affects patients’ self-care activities and self-efficacy levels [6, 8, 37]. Indeed, there are studies in the literature suggesting that stigma affects psychological health and self-care behaviors, disrupting blood sugar regulation [5, 10]. It has been reported that diabetic patients feel embarrassed to inject themselves in public, experience anxiety and postpone treatment-related requirements when traveling [31, 38, 39].

Successful participation in self-care activities by individuals requires health professionals to understand the psychological, social, emotional, and cognitive individual barriers to self-care practices [8]. Alzubaidi et al. demonstrated that individuals who perceive and/or experience stigma more strongly exhibit less participation in diabetes self-care behaviors. This relationship has also been observed in other conditions such as asthma and breast cancer [40]. Perceived stigma leads diabetes patients to avoid treatment, exhibit non-adherence to treatment, experience low self-esteem and self-efficacy, and suffer from general well-being issues such as fear, shame, guilt, and anxiety [4, 13]. Therefore, it is recommended to minimize diabetes patients’ self-stigmatization and increase their self-care power and efficacy to optimize treatment outcomes [6].

Conclusions

The study revealed that the patients with type 2 diabetes perceived moderate levels of stigma related to diabetes and had good levels of health-promotion self-care. The study also found a moderate negative correlation between the patients’ stigma level and self-care behaviors. In this context, it may be recommended to develop healthcare plans involving diabetic patients and their social environment to reduce stigma and improve their self-care behaviors alongside determining their stigma levels. Awareness-raising programs aimed at reducing diabetes-induced stigma can be organized for healthcare professionals, researchers, and public health practitioners. As insulin therapy is a frequently used treatment method in patients with type 2 diabetes, maintaining its continuity is crucial for their health. Particularly, the study determined that the perceived level of stigma among insulin-using patients was significantly high, while their self-care was low. Individual patient education programs can be organized to emphasize that insulin therapy is a part of type 2 diabetes treatment process and is not an indicator of personal failure. Additionally, patient and family education programs can be recommended to maintain appropriate self-care behaviors for diabetes control.

Funding

No funding was received for conducting this study.

Data availability

The data that support the fndings of this study are available from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

Ethics committee approval was obtained from the Non-Interventional Scientific Research Ethics Committee (Decision no: 2023-06/63) and an institutional permission from the hospital where the study would be conducted. Written and verbal consent was obtained from the participants after they were provided with necessary information. Each stage of the study was carried out in accordance with the Declaration of Helsinki.

Conflict of interest

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.