Stigma Impact Scale Research Articles

The relationship between perceived stigma and perceived stress in cognitive decline: a survey of persons with mild cognitive impairment and their caregivers.

While Alzheimer's disease and other causes of dementia have rapidly become a global health crisis with growing incidence that is unabated, the incidence of Mild Cognitive Impairment (MCI) far exceeds that of Alzheimer's disease. Persons with MCI demonstrate some level of cognitive impairment, but daily functions remain intact and there is no certainty that they will develop dementia. Yet, the possibility conjures a considerable amount of fear and anxiety, further fueled by a vast array of misconceptions and stigma. The pervasive nature of this stigma permeates society and culture at many levels. Persons with MCI who are at higher risk for development of dementia may be especially vulnerable to fear and stigma associated with the diagnosis. Based on this premise, the primary aim of this study was to examine the relationship between perceived stigma and perceived stress in persons with MCI and their care partners, including the relationship between income and the study variables. The secondary aim was to examine the effect of a combined cognitive rehabilitation and wellness program on these perceptions. Thirty participants were recruited from Mayo Clinic's Health Action to Benefit Independence and Thinking (HABIT) program. MCI (n = 15) and care partner (n = 15) participants completed the Stigma Impact Scale (SIS) and the Perceived Stress Scale (PSS) before and after the HABIT program. Average SIS and PSS scores decreased in the MCI, care partner, and combined groups, both pre- and post-HABIT. Linear regression was used to assess the relationship between perceived stigma and stress, controlling for income. A significant relationship was found between perceived stigma and perceived stress both pre and post-HABIT. The results suggest a relationship exists between perceived stigma and perceived stress in persons with MCI and their care partners, and an educational program such as HABIT may strengthen this relationship by informing participants of potential challenges that occur in cognitive decline. Understanding these relationships may provide an opportunity to provide tools for this vulnerable population.

The impact of art therapy on the relationships between individuals diagnosed with Alzheimer’s disease and their care partners

AbstractBackgroundIndividuals with dementia have long reported negative social and psychological experiences. The current study employed a small group art therapy intervention; the intra‐ and inter‐personal impact was assessed through patient and care partner self‐report.MethodThirty patient / care partner dyads were enrolled. Patients had an Alzheimer’s disease diagnosis, MMSE score of 18‐26, and insight into their condition. For each 4‐week session, 3 to 4 dyads jointly participated in a 90‐minute, weekly art therapy intervention, facilitated by a Registered Art Therapist. A pre‐test post‐test design was employed, with patients completing the Dyadic Relationship Scale, Rosenberg Self‐Esteem Scale, and Stigma Impact Scale; care partners completed the Dyadic Relationship Scale and Dementia Attitudes Scale.1,2,3,4 During each study visit, subjects viewed and discussed artwork, created art, and were encouraged to share their artwork with the group.ResultAnalysis was performed using Wilcoxon signed rank test. Scores for both subscales of the Dyadic Relationship Scale – Positive Dyadic Interaction and Dyadic Strain – revealed a significant improvement (p = 0.002 and p = 0.001, respectively) after art therapy. A significant increase in care partner scores was also apparent on the Dementia Knowledge subscale of the Dementia Attitudes Scale. Patient data showed a significant shift towards better self‐esteem scores after intervention.ConclusionThis study fills a gap in research targeting intra‐ and inter‐personal experiences of individuals with dementia. Results indicate that art therapy may improve relationship dynamics between individuals with Alzheimer’s disease and their care partners, and may improve patients’ self‐esteem.

Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia.

People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored the stigma experiences of Dutch and English people living with dementia as well as patterns and predictors of comfort with disclosure. Community-dwelling adults living with dementia in the Netherlands (n = 40) and England (n = 40) completed either the English versions or the Dutch translations of the Comfort with Disclosure scale and three stigma measures (Stigma Impact, Stigma Stress, and Secrecy Scale). We established the psychometric properties of the stigma measures and conducted correlation and regression analyses. Internal consistency was good to excellent for all measures in the Dutch sample. Small but significant differences were found between the Dutch and English samples on the total score of the Stigma Impact Scale and its subscale social isolation. Age was negatively associated with comfort disclosing to family, and desire for secrecy was negatively associated with comfort disclosing to both family and friends. The psychometric properties of the Dutch scales were satisfactory. Many people living with dementia would feel comfortable disclosing their diagnosis to family and friends, but stigma experiences can greatly affect this decision. Cross-cultural differences in stigma experiences in persons with dementia require further investigation.

Stigma, Anxiety, Depression, and Quality of Life Among Patients With Hepatitis C in Iran

Background: Hepatitis C is one of the most challenging viral infections worldwide. Patients with hepatitis C may experience some disease-related stigma. Objectives: The aim of this study was to evaluate perceived stigma and its role in predicting anxiety, depression, and quality of life among patients with hepatitis C. Materials & Methods: This cross-sectional analytic study was conducted in behavioral counseling centers of three cities, i.e., Khorramabad, Boroujerd and Noorabad, located in the western part of Iran, from May to August 2019. Stratified multistage sampling was used to select 144 patients diagnosed with hepatitis C. The WHOQOL-BREF Scale, Stigma Impact Scale (SIS), Beck Depression Inventory, Second Edition (BDI-II), and Beck Anxiety Inventory, Second Edition (BAI) were used to collect the data. Univariate and multivariate linear regression models were used to estimate the association of covariates on stigma and quality of life. The Stata 16 software was used to analyze the data at the significance level of 0.05. Results: The mean perceived stigma was 66.805 ± 1.291 with social rejection and social isolation achieving the highest scores (23.409 ± 0.551, 20.208 ± 0.437). In the multivariate regression model, depression (B=0.7, 95%; CI: 0.5, 0.89) and anxiety (B=0.21, 95%; CI: 0.02, 0.41) had direct significant associations with stigma independent of age, sex, marital status, and occupation. Depression (B=-0.27, 95%; CI:-0.47, -0.07), anxiety (B=-0.33, 95%; CI: -0.5, -0.16), and stigma (B=-0.41, 95%; CI: -0.56, -0.26) were inversely associated with patients’ quality of life. Conclusion: This study found a high perceived stigma score among HCV patients. Depression and anxiety were significantly associated with stigma. The quality of life of HCV patients were inversely associated with depression, anxiety, and stigma scores.

The Impacts of an Educational Program by Using Group Discussion on Perceived Stigma Among the Family Caregivers of People with Alzheimer’s Disease

Background: The objective of the present study was to determine the impacts of an educational program by using group discussion on perceived stigma among family caregivers of people with Alzheimer’s disease (AD). Methods: This nonequivalent non-randomized controlled trial was performed in 2015. A sample of 66 family caregivers of people with AD was recruited conveniently. The caregivers were non-randomly allocated to a control and an experimental group. Initially, the perceived stigma of all participants was measured by using the Stigma Impact Scale. Then a five-session educational program by using group discussion was held over five weeks for the caregivers in the experimental group. The caregivers in the control group received no intervention. The level of caregivers' perceived stress was re-assessed both immediately and one month after the intervention. Results: The difference between the groups in terms of pretest perceived stigma was not statistically significant (P = 0.146). However, immediately and one month after the intervention, the mean score of perceived stigma in the experimental group was significantly lower than in the control group (P < 0.05). The results of repeated measures ANOVA for the between-subject factor of the group also showed that the intervention had significant effects on the caregivers’ perceived stigma (P = 0.004). Conclusions: The findings of the present study showed the noticeable effects of the educational program using group discussion on the perceived stigma of family caregivers of people with AD. This finding can denote the importance of experience sharing in the psychological well-being of family caregivers. Through group discussion and experience sharing, caregivers learn the necessary skills for coping with their own problems. Given their effectiveness, educational interventions by using group discussion are recommended to reduce perceived stigma among family caregivers.

Relationship between Caregiving Burden, knowledge and stigma of Caregivers Caring for Older Adults with Alzheimer disease

Background: the level of burden is associated with severity of Alzheimer disease, frequency, and intensity of care, and absence of help. In many cases, mostly all members of the family become a stigma victim and could have feelings of shame about the disease. Aim: the aim of the study was to assess relationship between caregiving burden, knowledge and stigma of caregivers caring for older adults with Alzheimer disease. Design: the researchers used a descriptive-correlational cross sectional design to complete the study. Subjects: A convenience sample of 108 family caregivers of the older adults diagnosed with Alzheimer’s disease covered a period of one year (from 1st of May 2019 till 1st of June Settings: This study was carried out in the general hospital at patient clinic and Association of Alzheimer Patients at Mansoura city, Dekahlia governorate. Tools: Four tools were used to collect the data namely; Demographic and clinical data structure interview schedule sheet, The Zarit Burden Interview (ZBI), Alzheimer’s Disease Knowledge Scale (ADKS) and The Stigma Impact Scale (SIS): Results: The mean age of caregivers was 44.93 ± 9.135. And more than two- thirds of the study sample were females, while the mean age of elderly was (75.32 ± 5.901). And above half of the study subject were male (69.4%). A strong positive correlation was found between caregiver's burden and stigma. Conclusion: A statistical significance relation was found between all sociodemographic characteristics of family caregivers and each of caregiving burden, stigma, and knowledge. A strong positive correlation was found between caregiver's burden and stigma. Recommendations: Educational program for family caregivers not only about the disease processes, but also the way to manage symptoms, experiences, detect resources that could lower the level of caregiving burden, improve their knowledge and reduce sense of stigmatization.

Can we reduce the stigmatisation experience with psychosocial interventions? An investigation of the meeting centre support programme impact on people with cognitive impairments

IntroductionPeople living with dementia or mild cognitive impairment (MCI) experience stigmatisation and there are not many specific psychosocial interventions dedicated to help them coping with this issue, reducing its impact on their lives.ObjectivesThis study aimed to a) investigate the stigmatisation level among people with dementia and MCI in Poland, Italy and the United Kingdom and b) assess the role of the Meeting Centre Support Programme (MCSP) in decreasing stigmatisation.MethodsWe investigated outcomes for 114 people with dementia and MCI living in Italy, Poland and the UK who participated 6 months in MCSP or usual care (UC) using a pre/post-test control group study design. Level of stigmatisation was assessed with the Stigma Impact Scale: neurological impairment (SIS).ResultsStigmatisation level (SIS) among participants varied from 2 to 65 (median=33.5; Q1=27; Q3=41) with people from the UK experiencing a statistically significantly higher level of stigmatisation than people in Italy and Poland. In Italy, stigmatisation was lower (p=0.02) in the MCSP group following the intervention. In Poland, the social isolation level did not significantly change in MCSP, but increased (p=0.05) in UC. In the UK, the social rejection level raised (p=0.03) in MCSP. Overall, the combined data of the three countries did not show statistically significant differences in SIS between MCSP and UC.ConclusionsStigmatisation among people with dementia and MCI is complex and seems culturally dependent. There is a great opportunity in psychosocial interventions to reduce the burden of stigma among people with dementia which requires further investigation.DisclosureNo significant relationships.

Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia

BackgroundA diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of robust outcome measures that assess change. The Stigma Impact Scale (SIS) is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and preliminary psychometric properties of self-stigma measures for people with dementia for use as measures of change.MethodA 4-step sequential design of identifying, selecting, adapting and testing psychometric measures as follows: 1) identification of stigma outcome measures through reviewing anti-stigma intervention literature, 2) selection of candidate measures through quality assessment (Terwee criteria) and expert consultation, 3) adaptation for UK dementia population (Stewart and colleagues Modification Framework) 4) testing of adapted measures in people living with dementia (N=40) to establish acceptability and preliminary reproducibility (test retest), criterion (concurrent with SIS) and construct (negative convergence with Rosenberg self-esteem scale) validity.ResultsSeven measures were identified from the review, but most were poor quality (Terwee range: 0–4). Three measures were selected for modification: Stigma Stress Scale; Secrecy subscale of the Stigma Coping Orientation Scale; Disclosure Related Distress Scale. Internal consistency and test-retest reliability were acceptable (.866≤α≤ .938; ICC .721–.774), except for the Stigma Stress Scale (α= .643) for which the component subscales (perceived harm, ability to cope) had stronger psychometric properties. Concurrent validity with the SIS was not established (r<.7) although there were significant correlations between total SIS and perceived harm (r=.587) and between internalized shame and secrecy (r=.488). Relationships with self-esteem were in the hypothesized direction for all scales and subscales indicating convergent validity.ConclusionStigma scales from mental health are not readily adapted for use with people with dementia. However there is preliminary evidence for the acceptability, reliability and validity of measures of perceived harm, secrecy and stigma impact. Further conceptual and psychometric development is required.

Does the Meeting Centre Support Programme decrease the experience of stigmatisation among people with cognitive deficits?

Objectives This is the first study to focus on the role and impact of a psychosocial intervention, the Meeting Centre Support Programme (MCSP), for people living with dementia and mild cognitive impairment (MCI) on the experience of stigmatisation across three different European countries. Method A pre/post-test control group study design compared outcomes for 114 people with dementia (n=74) and MCI (n=40) in Italy, Poland and the UK who received either the MCSP or usual care (UC). The ‘Stigma Impact Scale, neurological disease’ (SIS) was administered at two points in time, 6 months apart. The Global Deterioration Scale (GDS) was used to assess the level of cognitive impairment. Results Although statistical analysis did not show any significant differences between MCSP and UC at pre/post-test for the 3 countries combined, there were significant results for individual countries. In Italy, the level of SIS was significantly lower (p=0.02) in the MCSP group following the intervention. The level of Social Isolation increased significantly (p=0.05) in the UC group at follow-up in Poland. The level of Social Rejection was significantly higher (p=0.03) over time for UK participants receiving MCSP compared to UC. Conclusion The experience of stigma by people living with dementia and MCI is complex and there may be different country specific contexts and mechanisms. The results do not enable us to confirm or disconfirm the impact of a social support programme, such as MCSP, on this experience. Difficulties in directly measuring the level of stigma in this group also requires further research.

Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK

Objectives: Until now little research has been done to answer the question of whether people with dementia experience stigma. No previous studies investigated possible differences between countries and cultures. Therefore, the aims of this study were to compare the experience of stigma (with social isolation, social rejection and internalised shame as components) among people with dementia and mild cognitive impairment (MCI) (n = 180) in Italy (n = 79), Poland (n = 47) and the United Kingdom (UK) (n = 54); and to investigate possible relationships with demographical and clinical outcomes.Methods: A one group multinational cross-sectional design was used. Stigma was measured with the Stigma Impact Scale (SIS), quality of life aspects with Dementia Quality of Life scale (DQOL) and Quality of Life Alzheimer’s Disease scale (QOL-AD), social support with Duke Social Support Index (DSSI), cognitive functioning with Global Deterioration Scale (GDS).Results: The level of stigmatisation (SIS) among study participants varied from 2 to 65 (median = 33.5; Q1 = 27; Q3 = 41). People with dementia in the UK experienced a higher level of stigmatisation than people in Italy and Poland. The experienced stigmatisation negatively correlated with social support (DSSI; rho = −0.42, p = 0.000) and quality of life (QOL-AD; rho = −0.39, p = 0.000). People who experienced a higher level of stigmatisation scored higher in negative mood DQOL subscale (rho = 0.28, p = 0.0002).Conclusion: There is a strong need for research into the individual experience of people with dementia across the world. This could help in providing support and care services that match their experience, needs, preferences; and in designing well informed awareness campaigns based on their voice.

Quality of Life Family Stigma and Impact of Stigma among the Siblings of Individuals with Intellectual Disability

Background: The persons with a disability might experience the strongest effect both in physical limitation and social stigma. However, the impact of disability is also experienced by those who live with him including parents, grandparents and siblings. The research has shown that parents of a child with the intellectual disability (ID) experience impact of disability on social, personal and economic areas. Objective: To ascertain the quality of life, stigma and impact of stigma among siblings of children with intellectual disability. Sample: The study sampled 45 normal siblings of individuals with intellectual disability studying in a special school (equally from mild, moderate and severe) with either sex between 14-18 years of age after taking informed consent of their legal representative. Design : A cross-sectional institutional based study with purposive sampling technique was done. Tool: WHO quality of life-brief scale, family stigma scale, stigma impact scale was used to assess QoL, family stigma and stigma impact respectively. Results: In the present study siblings with intellectual disability have a better quality of life low level of stigma experience and obvious minimal impact of stigma on their life. The level of severity of siblings’ disability has no influence on the study variables. In socio-demographic correlations education, religion, family types, domicile has a significant level of correlations with some of the study variables. Conclusion: The present study gave siblings’ perspective on stigma which showed deviation from parents’ reports. Keywords: Intellectual disability, siblings, stigma, quality of life

Does participation in the Meeting Centre Support Programme change the stigma experienced by people with dementia?

IntroductionThe Meeting Centre Support Programme (MCSP) is a community-based approach to support people living with dementia and their families. It was developed in the Netherlands and has been implemented in other European Countries (Italy, Poland and the UK) within the JPND-MEETINGDEM project.AimsTo assess the relationship between background characteristics of people with dementia participating in MCSP, mood, quality of life (QoL) and experienced stigma, and to explore if and how the experienced stigma changed after 6 months of participation in MCSP.MethodsA pretest (M1) post-test (M7) control group design with matched groups regarding severity of dementia was applied. In each country, a minimum of 25 participants using MCSP were compared with people with dementia receiving ‘usual care’. Data were collected with the Stigma Impact Scale, Cornell Scale for Depression in Dementia, Global Deterioration Scale and two QoL scales (QoL-AD &amp; DQoL). Differences in background characteristics were taken into account in the analyses.ResultsThe preliminary analysis on 116 participants at baseline shows that the level of stigma was low to moderate. People felt more socially rejected in the UK than in Poland and Italy. The level of perceived stigmatization appeared negatively correlated with QoL areas and positively correlated with negative mood. Changes after 6 months will be presented.ConclusionsIt is expected that after 6 months people living with dementia participating in MCSP will experience less stigma, as in contrast with usual care MCSP promotes social integration of people with dementia and person-centered support.Disclosure of interestThe authors have not supplied their declaration of competing interest.

The experience and impact of stigma in Saudi people with a mood disorder

IntroductionSelf-stigma plays a powerful role in attitudes toward mental illness and seeking psychological services. Assessing stigma from the perspective of people with mood disorders is important as they were ranked as major causes of disability.ObjectivesTo determine the extent and the impact of stigma experience in Saudi patients with mood disorder and compare them between depression and bipolar disorder patients. To test if stigma is a universal experience and has similar psychosocial impact across cultures.AimIt's a part of multicenter international study comparing its results to the universal experiences inthe perspectives of individuals with mood disorder.MethodologyWe randomly interviewed 94 individuals with mood disorder at King Khalid University Hospital using valid reliable tool, Inventory of Stigmatizing Experiences (ISE), which has two components: Stigma Experiences Scale (SES) and Stigma Impact Scale (SIS).ResultsISE was validated in a population of Saudi patients with mood disorder. There were no significant differences in stigma between patients with bipolar or depressive disorder on SES or SIS. However, over 50% of all respondents tried to hide their mental illness from the others, and to avoid situations that might lead them to be stigmatized. In comparison with the Canadian population, Saudi participants scored lower on both SES and SIS, which may be due to cultural differences.ConclusionStigma associated with mood disorder is serious and pervasive. It's important first to understand how patients perceive stigma in order to conduct successful anti-stigma programs. The ISE is a highly reliable instrument among cultures.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Perceived stigma in persons with early-stage dementia: Longitudinal findings: Part 1

This longitudinal study examined perceived stigma in persons with dementia, with 50 persons with dementia, and 47 corresponding family caregivers. Data were collected at baseline and at 6, 12, and 18 months. Study results are reported in two parts, with findings regarding the stability of perceived stigma, measured using the modified Stigma Impact Scale, and relationship of stigma to person-centered variables being reported here. Findings included stability in perceived stigma, which did not show a downward trend until 18 months. Significant differences at baseline were found only for geographic location (rural vs. urban) with persons living in urban areas having higher levels of Stigma Impact Scale internalized shame compared to rural counterparts. Cognitive functioning was significantly, positively related to the Stigma Impact Scale social rejection and social isolation subscales. Findings support the enduring nature of perceived stigma over the early disease stages and the relationship of perceived stigma to some person-centered characteristics.

The effects of perceived stigma on quality of life outcomes in persons with early-stage dementia: Longitudinal findings: Part 2

This article is the second report from a study examining perceived stigma in persons with dementia with findings regarding the association between stigma and quality of life outcomes being reported here. Fifty persons with dementia and 47 family caregivers were sampled, with data being collected at baseline and six, 12, and 18 months. The modified Stigma Impact Scale measured perceived stigma. Quality of life outcomes included: depression, anxiety, behavioral symptoms, personal control, physical health, self-esteem, social support, and activity participation. Linear mixed model or generalized linear mixed model (for depression) analyses revealed that some aspect of perceived stigma was associated with each outcome. Social rejection was associated with anxiety, behavioral symptoms, health, and activity participation. Internalized shame was associated with anxiety, personal control, health, self-esteem, social support understanding and assistance, and activity participation. Finally, social isolation was associated with depression, anxiety, personal control, health, self-esteem, social support understanding, and activity participation. The complexity of relationships between perceived stigma and quality of life outcomes is evident from these findings.

Effects, experiences, and impact of stigma on patients with bipolar disorder

BackgroundMany people with mental illness experience stigma that has impacted their lives. In this study, we validated the Inventory of Stigmatizing Experiences (ISE) as a tool to help quantify the stigma experienced by patients with bipolar disorder and its impact on their lives. The ISE has two components, ie, the Stigma Experiences Scale (SES) and the Stigma Impact Scale (SIS), which were administered to a population of Argentinean patients with bipolar disorder. We characterized the differences between these two populations using the SES and SIS. Finally, we compared SES and SIS scores with those in a population of Canadian patients with bipolar disorder.Methods:The SES and SIS scales were administered to tertiary care patients with bipolar I and II disorder in Argentina (n = 178) and Canada (n = 214).Results:In this study, we validated both SES (Kuder-Richardson coefficient of reliability, 0.78) and SIS (Cronbach’s alpha, 0.91) scales in a population of Argentinean patients with bipolar disorder. There were no significant differences in stigma between patients with bipolar I or II disorder on SES or SIS. However, over 50% of all respondents believed that the average person is afraid of those with mental illnesses, that stigma associated with mental illness has affected their quality of life, and that their self-esteem has suffered due to stigma. In comparison with the Canadian population, Argentinean participants scored lower on both the SES and SIS, which may be due to cultural differences or to differences in population characteristics.Conclusion:Stigma associated with mental illness is serious and pervasive. If we are to find successful strategies to mitigate stigma, it is first important to understand how patients perceive such stigma. The ISE is a valuable tool which allows us to do this with high reliability among cultures.

Perceived illness stigma is associated with depression in female patients with systemic lupus erythematosus

Objectives1)To assess the prevalence of depression in a sample of female patients with systemic lupus erythematosus (SLE)2)To evaluate the association between perceived illness stigma and depression in those patients. MethodsIn a cross-sectional study, 80 female SLE patients were evaluated for the presence of depression and perceived illness stigma. Depression was diagnosed using the Structured Clinical Interview for DSM-IV Axis Ι disorders, clinical version (SCID-I-CV), the severity of the depressive symptoms was evaluated using the Hospital Anxiety and Depression Scale-Depression Subscale (HADS-D), and the stigma of illness was assessed using the Stigma Impact Scale (SIS). ResultsThe prevalence of depression among female SLE patients was 18.75% (15/80). The perceived illness stigma was higher among the depressed group than among the non-depressed group (SIS mean scores were 43.87±7.87 and 26.62±3.79 respectively P<.001), there was a significant positive correlation between SIS and HAD-D scores (r=0.73, P=.002), and there was a significant association between perceived illness stigma and diagnosis of depression (R2=0.53, P=.002, odds ratio=3.2), which increased the severity of depressive symptoms (R2=0.64, P<.001). ConclusionThis study demonstrates a significant association between illness stigma and depression in female SLE patients which may be important in promoting optimal coping for these women .