Stigmatization

Background: People with ME/CFS are often stigmatized by doctors. Those affected report that they are not believed, that negative motives (e.g. unfounded attempts to retire, seeking attention) or personality traits are attributed to them and/or that they are not given adequate treatment or even any treatment at all. The resulting physical and psychological stress for those affected is considerable. The relationship of trust with those treating them is severely damaged; incorrect treatment or lack of treatment can - in addition to the suffering caused by untreated symptoms - promote a worsening of the illness. Both a lack of knowledge about ME/CFS and negative attitudes towards patients with (supposedly) medically unexplained or non-curatively treatable conditions are suspected to be causes of stigmatization. An intervention to destigmatize should therefore include elements of knowledge and experience. The aim of this project is therefore to develop a workshop for medical students that reduces the stigmatization of patients with ME/CFS by future doctors.  

Study Objectives: 

• Development of a seminar to reduce the stigmatization of people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) for medical students 
• Testing the feasibility and effectiveness of this new seminar

Study Design: Pilot study – non-controlled cross-sectional study

Target Group: medical students

Period: 2024 - 2025

Sponsor: Deutsche Gesellschaft für ME/CFS (German Association for ME/CFS)

Background: Chronic skin diseases are experienced not only physically, but also psychologically as an enormous impairment by those affected. In addition to comorbidities such as depression and anxiety disorders and the resulting social withdrawal, self-stigmatization also represents a major psychological burden. In this regard, it has been shown that self-compassion has a positive impact on self-stigma and quality of life. However, no intervention based solely on meditation has been developed specifically for this purpose yet. Accordingly, the study aims to examine the impact of a self-compassion-based meditation practice on self-stigma in people with visible chronic skin conditions.

Study Objectives: Development and evaluation of a 4-week program of weekly meditation (25 minutes each) via live video conference, specifically designed for people with visible chronic skin conditions. The aim is to reduce self-stigma and enhance quality of life.

Study Design: prospective, randomized controlled intervention trial 

Target Group: adults with a primary chronic skin disease of psoriasis, hidradenitis suppurativa, atopic dermatitis, alopecia areata, rosacea or vitiligo, without current psychiatric/psychotherapeutic treatment (n = 40)

Period: February - June 2024 

Background: A major challenge in the context of visible chronic skin diseases is the experience of stigma, both from others (public stigma) and the individuals themselves (self-stigma). Self-stigma frequently leads to low self-esteem and limitations in daily life. As there is a lack of interventions addressing self-stigma, this project aims to develop an online-intervention to prevent and/or reduce self-stigma in patients with psoriasis, atopic dermatitis, hidradenitis suppurativa, alopecia areata, and vitiligo. 

Study Objectives: 

• Identify psychosocial predictors of self-stigma and underlying mechanisms
• Review existing interventions targeting the self-stigma and modifiable psychosocial factors predisposing, precipitating and maintaining self-stigma
• Develop and evaluate an online-intervention for patients with different visible skin diseases, combining a skin-generic and disease-specific approach, to prevent and/or reduce self-stigma
• Determine predictors of response to the online-intervention

Study Design: systematic literature review; prospective, interventional, randomized controlled trial

Target Group: patients with psoriasis, atopic dermatitis, hidradenitis suppurativa, alopecia areata, or vitiligo (n = 500)

Period: 2022 – 2025 (+ 2 years)

Sponsor: BMBF
 

Background: Experiences of stigma (both social and internalized/self stigma) are well-documented for people with skin disease. This social and self-directed rejection may be especially detrimental during developmental period of emerging adulthood, when individuals are continuing to develop their identity, establish intimacy in relationships, and pursue educational or vocational goals. Moreover, the ways in which individuals cope with the stressor of stigma can contribute to psychosocial adjustment across a range of negative and positive outcomes. This is the first study to examine coping with skin disease stigma within a developmental context.

Study Objectives:

• Elucidate the relationship between the visibility of skin disease with experiences of social stigma among young adults with chronic skin disease.

• Establish the extent to which experiences of social stigma correlate with multiple indicators of psychosocial adjustment: psychological health, physical health, social and sexual well-being, and health behaviors. 

• Test pathways that may underlie the relationship between experiences of social stigma and psychosocial outcomes, including internalized stigma and coping efforts, individually and together as a serial process

Study Design: cross-sectional survey

Target Group: 170 patients between the ages of 18 to 35, seeking dermatological care with a primary skin disease diagnosis of:

• Psoriasis

• Atopic dermatitis

• Hidradenitis suppurativa (acne inversa)

Period: ongoing

Background: Psoriasis can have a massive impact on patients' lives and, in addition to the physical symptoms, can also lead to difficulties in their occupational life. A particular burden is the stigmatization of those affected, which has a negative impact on mental health and well-being. As people spend a large part of their time at work, stigmatization in this context can potentially be an even more serious burden than in many other everyday situations.

Study Objectives:
•    Measure the extent, forms, and consequences of psoriasis-related stigmatization of patients in the workplace.

Study Design: cross-sectional survey

Target Group: 250 persons with Psoriasis

Period: 2023-2024

Sponsor: Deutscher Psoriasis Bund e.V. (Research funding 2023)
 

Background: People with visible skin diseases often experience stigmatization in many types of social encounters. This stigmatization has a major impact on their social life, altering interpersonal relationships, and resulting in feelings of social alienation and rejection. In 2014, the World Health Assembly (WHA) urged its member states to improve healthcare for people with psoriasis and to take action against stigma. There is a great need for interventions tackling stigmatizing attitudes for various target groups.

Study Objectives:

• Develop a structured short intervention aimed at reducing stigmatizing attitudes towards skin diseases.

• Evaluate the effectiveness of this intervention in reducing stigmatizing attitudes towards psoriasis in medical students and future educators.

Study Design:

• Systematic review

• Prospective

• Interventional

• Randomized controlled trial

Target Group:

• Medical students (n = 127)

• Educators in training (n = 221)

Completed: 2021

Sponsor: Federal Ministry of Health, Germany

Associated Publications:

• Stigma in visible skin diseases - a literature review and development of a conceptual model

• Assessment of stigma related to visible skin diseases: a systematic review and evaluation of patient-reported outcome measures

• Perception and determinants of stigmatization of people with psoriasis in the German population

• Perception of stigmatization in people with psoriasis-qualitative analysis from the perspective of patients, relatives and healthcare professionals

• Translating the WHA resolution in a member state: towards a German programme on 'Destigmatization' for individuals with visible chronic skin diseases

• A Structured Intervention for Medical Students Significantly Improves Awareness of Stigmatisation in Visible Chronic Skin Diseases: A Randomised Controlled Trial

• Effectiveness of a structured short intervention against stigmatisation in chronic visible skin diseases: Results of a controlled trial in future educators

Background: Self-stigmatization is associated with a decrease in self-esteem, self-efficacy, and depressive affect. It constitutes a common and serious burden to the psychosocial well-being of individuals suffering from dermatological diseases. From a holistic and patient-centered perspective, understanding the determinants and consequences of self-stigmatization is a promising path in our goal to increase overall well-being in patients.

Study Objectives:

• Investigate the extent to which socio-demographic and clinical factors determine self-stigmatization.

• Measure the extent to which self-stigmatization is associated with reduced psychosocial well-being in patients with psoriasis and atopic dermatitis.

• Identify potential differences in self-stigmatization between these two groups of patients.

Study Design:

• Quantitative

• Observational

• Cross-sectional

Target Group: adults with psoriasis or atopic dermatitis

Period: 2021 – 2022

Background: The psychosocial burden for patients with visible chronic skin diseases is high. A particular problem is stigmatization by others, including looks, negative comments, avoidance and exclusion. In order to reduce stigmatization in the public, a multidisciplinary group developed a face-to-face intervention (“ECHT”) consisting of various components known to counteract stigma in other health conditions (self-experience, education, patient encounter). Initially, the intervention was administered to medical students and educators in training and showed promising effects: participants reported a significantly reduced desire for social distance from people with psoriasis, and less agreement to negative stereotypes and to disease-related false assumptions. Disseminating this intervention broadly and extending it to other target groups may reduce stigma and sensitize the public to the challenges and needs of persons living with a chronic skin disease. 

Study Objectives:

• Adapt an intervention against skin disease-related stigma (“ECHT”-intervention) for people working in professions dealing with body care (e.g. hairdressers, cosmeticians, physiotherapists, podiatrists).

• Test the feasibility and effectiveness of this new intervention in reducing stigma related to skin disease. 

Study Design:

• Prospective

• Interventional

• Randomized controlled trial

Target Group:

People working as or training to become:

• Hairdressers

• Cosmeticians

• Physiotherapists

• Podiatrists

Period: 2021 – 2023

Sponsor: Beiersdorf AG