Research - Disease

The Denver Principles

No authors named, 1983. National Lesbian and Gay Health Conference, Denver.

The Denver Principles, written in 1983 by people with AIDS who attended the National Lesbian and Gay Health Conference, held in Denver, Colorado that year. This self-empowering platform took charge of the conversation and challenged the stigma experienced by people with AIDS. Read The Denver Principles here. 

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Perceived HIV stigma in AIDS caregiving dyads

Wight, RG., Aneshensel, CS., Murphy, DA., Miller-Martinez, D., and Beals, KP ( 2006). Social Science and Medicine: 62,2: 444-446. doi.org/10.1016/j.socscimed.2005.06.004

This study examined the stigma experienced by dyads of adult sons and husbands with HIV and their caregiving mid-life mothers or wives. The stigma experienced by the person with HIV was greater than that of the caregiver, and the stigma perceived by the wife was greater than that of the mother. Resources addressing stigma should incorporate these factors. Read abstract here.

 

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Family Stigma and Caregiver Burden in Alzheimer’s Disease

Werner, P., Mittelman, MS., Goldstein, D., and Heinik, J.,(2011). The Gerontologist.  doi:10.1093/geront/gnr117

Caregivers of people with Alzheimer’s disease experience burden related to stigma, and this impacts the effectiveness of treatment to the person with the disease. The best way to address this stigma is to address stigma towards the Alzheimer’s disease. Read article here. 

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Stigma in patients with rectal cancer: a community study

L D MacDonald and H R Anderson (1984). Journal of Epidemiology of Community Health; 38(4): 284–290.
Half of patients with rectal cancer reported feeling stigmatized, with more so from those who had a permanent colostomy. Stigma had higher correlation with poor health, particularly emotional disorders, the presence of other medical problems, and with disablement. Higher SES did not result in lower levels of stigma. Read article here.

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Public attitudes about lung cancer: stigma, support, and predictors of support

Weiss, J., Stephenson, BJ., Edwards, LJ., Rigney, M., and Copeland, A. (2014). Journal of Multidisciplinary Healthcare; 7: 293–300. DOI: 10.2147/JMDH.S65153.
Efforts against lung cancer are best when targeted toward people who are employed, live in suburbia, and to be unsure of the cause of lung cancer. The supporters are more likely to be employed, female, younger, have higher income, to believe that genetics is the primary cause of lung cancer, and to believe that lung cancer can be cured when caught early. Read article here. 

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Identity threat and stigma in cancer patients

Knapp, Sarah; Marziliano, Allison, and Moyer, Anne (2014). Health Psychology Open; 1, 1

While stigma related to cancer has diminished in recent decades, the authors assert that their adapted model incorporates a person’s attributions, responses to situational threat, and disease/treatment characteristics to predict how a person tolerates stigma.  Read article here.

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Cancer and facial disfigurement: reducing survivors’ stigma in social interaction

Bonanno A, and Esmaeli B, (2012). Clinical Journal of Oncology Nursing;16(2):153-9.
Survivors of cancer with tumors around the eye area (peri/orbital cancer) often have facial differences after the tumor/s are removed. The authors conducted a qualitative study to assess the social interaction leading to stigma in this population, as well as the experiences of their family members. Interactions with strangers were observed and named (intrusion, sympathy, and benign neglect) and how they do/don’t foster stigma. The authors also identified ways to manage stigma. Read abstract here.

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Do people avoid sitting next to someone who is facially disfigured?

Vicky Houston and Ray Bull (1994). European Journal of Social Psychology; 24, 2: 279–284.

The authors observed travelers on a suburban railway significantly avoiding sitting next to fellow travelers who had a facial port-wine stain. The researchers concluded that reported perceptions of people with facial differences that they are stigmatized is real.  Read abstract here.

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The economic impact of mental health stigma and discrimination: a systematic review.

Sharac J, McCrone P, Clement S, Thornicroft G. (2010.) Epidemiol Psichiatr Soc.;19(3):223-32.
The authors examined 30 articles about 27 different studies that explored the financial cost of stigma related to mental health care. They concluded that reducing stigma will have an economic benefit as well as a social one. Read abstract here.

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Stigmatized Illnesses and Health Care

Sartorius, Norman (2007.) Croatian Medical Journal; 48(3): 396–397.
Dr. Sartorius examines the benefits received by people with disability, and the real costs of related stigma. He then asks about the stigmatizing behavior of  professionals working in healthcare systems and states that they have as much to gain from ending stigma as the individuals experiencing the stigma themselves.  Read article here. 

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An exploratory survey measuring stigma and discrimination experienced by people living with HIV/AIDS in South Africa: the People Living with HIV Stigma Index

Dos Santos, MLKruger, P, Mellors, SE, Wolvaardt, G and Elna van der Ryst, E (2014). BMC Public Health, 14:80.   

This study assessed current and emerging HIV/AIDS stigma and discrimination trends in South Africa as experienced by people living with HIV/AIDS (PLHIV). Findings suggest that PLHIV in this population experience significant levels of stigma and discrimination that negatively impact on their health, working and family life, as well as their access to health services. Internalised stigma was prominent, with many participants blaming themselves for their status. Read article here.

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Burden of Disease: The Psychosocial Impact of Rosacea on a Patient’s Quality of Life

Huynh, TT (2013.) American Health & Drug Benefits: 6(6)348-354.

Note: The author is a contract medical writer for Galderma Laboratories, LP,
Fort Worth, TX.
The facial skin manifestations of rosacea have significant implications on patients’ well-being and social and emotional health. The author explores the self-perception of disease manifestations and how the disease manifests, along with medical treatment. Read article here. 

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Self-concept, stigma and quality of life in chronic schizophrenia and chronic skin disorders: A comparative study

Rai, A., Khess, CR., Bhatacharjee, D., Gupta, AK., Koushal, V. (2014.) Delhi Psychiatry Journal;19(1)65-73.

People with schizophrenia experience greater levels of stigma, lower levels of self concept, and lower quality of life compared to people with chronic skin conditions. Read article here. 

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Two studies of comparative stigma: employer attitudes and practices toward rehabilitated convicts, mental and tuberculosis patients

Brand RC Jr, Clairborn WL, (1976.) Journal of Community Mental Health;12(2):168-75.

The authors compared employers considered hiring people from three groups: people with a mental illness history, a criminal record, and tuberculosis. Read abstract here. 

 

 

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Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma

Vernooij-Dassen, MJFJ., Moniz-Cook, ED., Woods, RT et al (2005.) International Journal of Geriatric Psychiatry; 20,(4) 377–386. 

This European study, based on focus groups, concluded that healthcare providers delays in identifying dementia were based on a belief that there is little to do in the early stages of the disorder. Overcoming these delays requires looking closely at the process and underlying factors of stigma. Read abstract here.

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World Alzheimer Report 2012: Overcoming the stigma of dementia.

Batsch NL, Mittelman MS.  (2012.) Alzheimer’s Disease International.

In this report the authors explore the stigma of dementia by surveying people with dementia and their caregivers. Guest essayists contributed and literature was reviewed. They also identified stigma-reducing projects, and suggest that this must be the first step to improving the lives of people with dementia and their caregivers. Read report here.

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Difficulties in disclosing the diagnosis of dementia: a qualitative study in general practice

Phillips, J., Pond, C. D., Paterson, N. E., Howell, C., Shell, A., Stocks, N. P., … Marley, J. E. (2012). The British Journal of General Practice,62(601), e546–e553.

The authors explored the impact of stigma and other factors impacting general practitioners in Australia’s disclosure of dementia to their patients. Read article here. 

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Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment

Garand, L., Lingler, JH., O’Conner, K., and Dew, MA., (2009.) Research in Gerontological Nursing 2(2):112–121.

The authors examine the impact of labeling and stigma on clinical research participation, and how stigma can affect numerous aspects of the nursing research process. Strategies are presented for addressing stigma-related barriers to participation in clinical research on dementia and MCI. Read author’s manuscript here.

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Patient with Alzheimer’s Disease: A Neglected Dimension of Dementia Research

Cotrell, V., and Schulz, R (1993.) The Gerontologist, 33(2):205-211.

The authors recognize that historically researchers treat people with Alzheimer’s disease as objects, and don’t include their perspective in research. Here they examine the perspective of people with dementia in three research areas and identify research challenges and opportunities to increase understanding of dementia. Read abstract here. 

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Public Stigma: The Community’s Tolerance of Alzheimer Disease

Blay, SL and Toledo Pisa Peluso, E (2010.) The American Journal of Geriatric Psychiatry, 18, 2:163-171.

The authors interviewed 500 people in Brazil to assess levels of stigma related to people with Alzheimer’s Disease using stereotypes, prejudice and discrimination as qualifications. The authors concluded that dimensions of stigma were highly prevalent in relation to Alzheimer’s Disease, and that interventions are needed to reduce the negative effects of stigma. Read abstract here. 

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Skin disease and stigma in emerging adulthood: impact on healthy development

Roosta, N., Black DS., Peng, D., and Riley, LW (2010.) Journal of Cutaneous Medicine and Surgery 14(6):285-90.
The authors surveyed California college students about their perceptions of being stigmatized due to acne and eczema. Read abstract here.

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Social stigma in diabetes : a framework to understand a growing problem for an increasing epidemic.

Schabert J, Browne JL, Mosely K, Speight J. (2013.) Patient; 6(1):1-10

The authors reviewed literature to better understand diabetes-related stigma. They found that people who do not have diabetes assume that diabetes is not a stigmatized condition, while people with diabetes report that they experience significant stigma. Diabetes-related stigma has negative impact on psychological well-being and clinical outcomes. The authors propose a framework that highlights the causes (attitudes of blame, feelings of fear and disgust, and the felt need to enforce social norms and avoid disease), experiences (being judged, rejected, and discriminated against), and consequences (e.g., distress, poorer psychological well-being, and sub-optimal self-care) of diabetes-related stigma. Read abstract here.

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Epilepsy familiarity, knowledge, and perceptions of stigma: report from a survey of adolescents in the general population

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Living with coeliac disease: a grounded theory study

Rose, C and Howard, R. (2014.) Journal of Human Nutrition and Dietetics; 27,1:30–40.

The authors concluded that “Gluten-free living entails a substantial restriction of food choice. The losses and changes entailed impact on the personal and social identities of those living with coeliac disease, and on the behaviour of others towards them. Psychosocial interventions focussed on facilitating coping and adjustment may benefit those experiencing difficulties.” Read article here.

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Not all my fault: Genetics, stigma, and personal responsibility for women with eating disorders

Easter, MM (2012.) Soc Sci Med ; 75(8): 1408–1416

This study explored how genetic framing of eating disorders and mental illness affected women’s perception of stigma and responsibility on their diagnoses. Read unedited article here.

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Stigma experience in skin disorders: an Indian perspective

Chaturvedi SK, Singh G, Gupta N, (2005.) Dermatologic Clinics;23(4):635-42
Social stigma toward dermatologic disorders in the Indian society is quite widespread, especially toward leprosy. Dermatologists are expected to consider quality of life issues along with social aspects, nature of disorder, efficacy, and tolerability of various therapeutic options to optimize relief and comfort to their patient. Read abstract here.

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Food that makes you different: the stigma experienced by adolescents with celiac disease

Olsson C, Lyon P, Hörnell A, Ivarsson A, Sydner YM. (2009.) Qualitative Health Research;19(7):976-84.

Researchers explored adolescents’ compliance with the gluten-free diet (GFD)  as it related to stigma. The GFD often required discussions and special requests, so eating in public had the effect of making an invisible condition visible, and thereby creating a context for felt or enacted stigma. The results of the study show that the GFD can produce stigma experiences in adolescence, and that dietary compliance (or lack thereof) can be understood in terms of dealing with GFD concealment and disclosure. Read abstract here.

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Concealable Stigmatized Identities and Psychological Well-Being

Quinn, DM, and Earnshaw, VA (2013.) Social and Personality Psychology Compass; 7(1): 40–51.

The authors discuss how identities that are socially devalued or negatively stereotyped affect psychological well-being, They explore existing research and areas to explore in the future.  Read article here.

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Understanding Concealable Stigmatized Identities: The Role of Identity in Psychological, Physical, and Behavioral Outcomes

Quinn, DM, and Earnshaw, VA (2011.) Social Issues and Policy Review, 5, 1:160–190

The authors argue that stigma, discrimination, disclosure reactions and positive information, coupled with the importance of the identity determine how people with concealable stigmatized identities (e.g. mental illness, chronic disease) influence their psychological, physical, and behavioral health outcomes. Suggestions for policy implications are included.  Read article here.

 

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The game of fear, blame and shame: stigma of HIV, a major public health debacle

Rana, S, and Parikh, C, (2014.) Journal of Pediatric Neonatal Care, 1(1): 00003

The authors share stories of how people with HIV/AIDS have been stigmatized. Read editorial here. 

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A method for the quantitative analysis of the layering of HIV-related stigma

Reidpath, DD, and Chan, KY (2005.) AIDS Care; 17(4): 425-432.

The authors explore ways of analyzing the intersectionality of multiple stigmas and their impact on HIV-related prevention and intervention programs. Read article here. 

 

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HIV stigma mechanisms and well-being among PLWH: A test of the HIV stigma framework

Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MM, (2013.) HIV stigma mechanisms and well-being among PLWH: A test of the HIV stigma framework. AIDS Behavior; 17:1785-95.

The researchers interviewed 95 people who had HIV and assessed the HIV Stigma Framework: how each stigma mechanism (internalized, enacted and anticipated) affected their health and well-being. Internalized stigma was associated with affective and behavioral health and well being, while enacted and anticipated stigma associated with physical health and well-being. The authors concluded that understanding the affects of different types of stigma will lead to improved interventions.  Read article here. 

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Cutaneous body image dissatisfaction and suicidal ideation: Mediation by interpersonal sensitivity

Gupta, MA, Gupta, AK (2013.) Journal of Psychosomatic Research, 75(1) 55 – 59.
Suicidal ideation is greater among people who are unhappy with their skin and experience perceptions of related stigmatization and social exclusion. Interpersonal sensitivity (IS), a symptom dimension related to self-consciousness, feelings of inferiority and social exclusion, mediates this effect. Read abstract here. 

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The impact of stigma in healthcare on people living with chronic illnesses

Earnshaw VA, Quinn DM (2012.) Journal of Health Psychology, 17:157-68. 

The researchers explored the impact of internalized, experienced, and anticipated stigma within healthcare settings on the quality of life of people living with chronic illnesses. They found that participants who internalized stigma accessed healthcare less and experienced a decreased quality of life. Read abstract here. 

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Stigma and racial/ethnic HIV disparities: Moving toward resilience.

Earnshaw, VA, Bogart, LM, Dovidio, JF, and Williams, DR (2013.) American Psychologist, 68(4) 225-236.

The researchers introduce the Stigma and HIV Disparities Model to describe how societal stigma related to race and ethnicity is associated with racial/ethnic HIV disparities via its manifestations due to residential segregation, discrimination and self-stigma. The authors address multiple, co-occurring stigmas and suggest that strength-based interventions can reduce disparity. Read abstract here.

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From Conceptualizing to Measuring HIV Stigma: A Review of HIV Stigma Mechanism Measures

Earnshaw, VA, and Chaudoir, SR (2009.) AIDS and Behavior, 13(6)1160-1177.

The HIV Stigma Framework explores how the stigma of HIV elicits a series of stigma mechanisms, which in turn lead to deleterious outcomes for HIV uninfected and infected people.  Read abstract here. 

 

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Association of perceived stigma and mood and anxiety disorders: results from the World Mental Health Surveys

Alonso J, Buron A, Bruffaerts R, et al. (2008.) Acta Psychiatrica Scandanavica; 118(4): 305–314.

This grand-scale, international study surveyed 80,737 adults residing in 16 countries and found that perceived stigma is frequent and strongly associated with mental disorders worldwide – more so than with other chronic physical conditions. The stigma is greater among people living in developing countries, compared to those in developed countries. Efforts to alleviate stigma among individuals with co-morbid depression and anxiety are needed. Read article here.

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A Model of (Often Mixed) Stereotype Content: Competence and Warmth Respectively Follow from Status and Competition

Fiske, S.T., A.J.C. Cuddy, P. Glick, and J. Xu. (2002.) Journal of Personality and Social Psychology 82(6): 878–902.

Stereotype Content Model hypothesizes that competence and warmth determine stereotyping, depending on the balance (high or low) of each. The researchers explored  gender, ethnicity, race, class, age, and disability as they pertained to various combinations of competence and warmth. Read article here. 

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Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment

Garand, L, Lingler, J.H., O’Conner, K, and Dew, M.A. (2009.) Res Gerontol Nursing; 2(2): 112–121.

While labeling dementia and mild cognitive impairment (MCI) provide valuable therapeutic and research benefits, the stigma that is associated with the label can interfere with participation in clinical trials and accessing care. Researchers must work to overcome the barriers that surface as a result of the stigma.  Read manuscript here. 

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Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia.

Asbring, P., and Narvanen, A.L. (2001). Qualitative Health Research 12(2):148-160.

Stigma was experienced by women prior to diagnosis, as the veracity, morality, and accuracy of their symptoms was questioned. Read abstract here. 

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Stigmatizing attitudes towards individuals with anorexia nervosa: an investigation of attribution theory.

Zwickert, K., & Rieger, E. (2013). Journal of Eating Disorders, 1(1), 5.

This study contributes to the small body of research examining stigmatizing attitudes held towards individuals with Anorexia Nervosa. Evidence suggests that these attitudes may be even stronger than those held towards obese individuals. Read article here.

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The stigma of migraine

Young, W. B., Park, J. E., Tian, I. X., & Kempner, J. (2013). PLoS ONE, 8(1), e54074.

Although many claim that migraine is stigmatizing, to date there has been only one study on stigma in people with migraine. This study measures how much stigma migraine patients experience in comparison to epilepsy patients – a group that has been studied extensively. Read article here.

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Examining the relationships of depressive symptoms, stigma, social support and regimen-specific support on quality of life in adult patients with epilepsy.

Whatley, A. D., DiIorio, C. K. & Yeager, K. (2010). Health education research, 25(4), 575-584.

Research findings show that people with epilepsy face many challenges that can negatively affect quality of life (QOL). This study examines the individual relationships between depressive symptoms, stigma, social support and regimen-specific support and QOL in adults with epilepsy. Read article here.

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Attitudes about sexual disclosure and perceptions of stigma and shame.

Cunningham, S. D., Tschann, J., Gurvey, J. E., Fortenberry, J. D., & Ellen, J. M. (2002). Sexually transmitted infections, 78(5), 334-338.

The authors studied the association between the stigma of having a sexually transmitted disease and adolescents’ past STD related health care; between stigma, shame, and perceptions about disclosure of sexual behaviors to a doctor or nurse; and whether the association of stigma, shame, and care seeking was moderated by perceptions about disclosure. Read article here.

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Stigma, shame, and blame experienced by patients with lung cancer: qualitative study.

Chapple, A., Ziebland, S., & McPherson, A. (2004). BMJ, 328(7454), 1470.

Narrative interviews with patients with lung cancer are used to explore their perceptions of and experiences with stigma. Read article here.

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Workplace discrimination and traumatic brain injury: the national EEOC ADA research project.

McMahon, B.T., West S.L., Shaw, L.R., Waid-Ebbs K., Belongia, L. Work 25(1):67-75, 2005.

Researchers explore the likelihood and conditions of employment discrimination following TBI. Read abstract here.

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Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment.

 Garand, L., Lingler, J.H., Conner, K.O., and Dew, M.A. Research in Gerontological Nursing, 2(2): 112–121. 2009.

There is a stigma associated with the labels of dementia and mild cognitive impairment that impedes peoples’ willingness to seek and receive care. Read article here.

 

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‘I call it the blame and shame disease’: a qualitative study about perceptions of social stigma surrounding type 2 diabetes.

Browne, J. L., Ventura, A., Mosely, K., & Speight, J. (2013). BMJ open, 3(11), e003384.

This qualitative study is the first to describe, in detail, the perceptions and experiences of diabetes-related stigma from the perspective of adults with type 2 diabetes mellitus (T2DM). Read article here.

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Perceived stigma, strain, and mental health among caregivers of veterans with traumatic brain injury.

Phelan, SM, Griffin, JM, Hellerstedt, WL, Sayer, NA, Jensen, AC, Burgess, DJ and van Ryn, M. Disability and Health Journal, 4(3); 177-184, 2011.

The researchers found that when veterans with traumatic brain injury’s caregivers’ perceived discrimination and stigma, the caregivers experienced poor mental health outcomes. Read abstract here.

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Trauma, mental health, distrust, and stigma among HIV-positive persons: implications for effective care.

Whetten, K., Reif, S., Whetten, R., & Murphy-McMillan, L. K. (2008). Psychosomatic Medicine, 70(5), 531-538.

Individuals living with HIV often have complicated histories, including traumatic events, mental illness and stigma. As the medical community adapts to managing HIV as a chronic disease, understanding how these experiences affect adherence to treatment regimens, greater HIV risk behavior, and lower patient quality of life become critical to HIV care and prevention. Read article here.

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HIV/AIDS stigma: an impediment to public health.

Valdiserri, R. O. (2002). American journal of public health, 92(3), 341.

Stigma is not new to public health, nor is it unique to HIV/AIDS, but undoubtedly, stigma needs to be recognized as a continuing impediment to HIV prevention and care programs. Read article here.

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Social stigma concerns and HIV medication adherence.

Rintamaki, L. S., Davis, T. C., Skripkauskas, S., Bennett, C. L., & Wolf, M. S. (2006). AIDS Patient Care & STDs, 20(5), 359-368.

The threat of social stigma may prevent people living with HIV from revealing their status to others and serve as a barrier to HIV treatment adherence. Clinical care directed to individuals living with HIV should therefore include considerations for patient sensitivity to social stigma. Read article here.

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Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward.

Mahajan, A. P., Sayles, J. N., Patel, V. A., Remien, R. H., Ortiz, D., Szekeres, G., & Coates, T. J. (2008). AIDS (London, England), 22(Suppl 2), S67.

This paper reviews the scientific literature on HIV/AIDS related stigma to document the current state of research, identify gaps in the available evidence, and highlight promising strategies to address stigma. Read article here.

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Internalized stigma among people living with HIV-AIDS.

Lee, R. S., Kochman, A., & Sikkema, K. J. (2002). AIDS and Behavior, 6(4), 309-319.

Failing to address stigma limits the potential of people living with HIV to live full and productive lives and assert the rights to which they are entitled and hinders all prevention, treatment, and care efforts. Read article here.

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