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

Abstract

The burden of visible skin diseases (VSDs) includes not only physical symptoms but also psychosocial consequences such as depression, anxiety, impaired quality of life and low self‐esteem. Stigmatization was shown to play a major role in people with skin diseases. The aim of the study was to review the evidence for the components, drivers and impacts of (self‐)stigma, and to organize the data into a series of conceptual models. A targeted literature search was conducted to identify studies on (self‐)stigma in relation to VSD. Conceptual models of stigma in VSDs were developed from existing generic conceptual models for VSD and of generic conceptual models of stigma and were refined after discussion with a board of experts, patient advocacy groups, clinicians and researchers. A total of 580 references were identified, of which 56 references were analysed and summarized. Two conceptual models of stigma were identified: one with external stigma and self‐stigma dimensions, the other for self‐stigma in mental health. These models were adapted to allow a complete description of stigma in VSDs. For this, a distinction was made between ‘discrimination’ and ‘impact’. Finally, five models were developed: macro‐overview; stigma, impact and socio‐demographics; stigma, impact and disease characteristics; stigma, impact and quality of life; and stigma, impact and coping. Gaps were identified in available quantitative evidence. To our knowledge, this is the first conceptual model of stigma in VSDs. The model will help to standardize evaluation of stigma and to enhance empirical evaluation of anti‐stigma interventions in VSDs. Further research should be conducted to develop a more complete model in stigma due to significant gaps in existing evidence, particularly including the stigma in others (external stigma) and also to cover a broader range of VSDs as their impact on particular dimensions of stigma differs.

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

“…Three aspects became obvious from our results: validated instruments are predominantly available for (i) Hansen's disease, (ii) adults and (iii) concerning felt stigma of individuals affected by a visible skin disease. This is in line with previous findings that report a gap in evidence concerning socio‐demographic and disease characteristics, as well as a strong focus of research on self‐stigma and a lack of studies focusing on enacted stigma 16 . However, this circumstance limits knowledge about causes and impact of stigma – particularly regarding enacted stigma – in visible skin diseases in general and in individual skin diseases, and patients of different age groups.…”

“…being denied a job) and subtle forms of social devaluation, for example patronization, harsh treatment or social avoidance of the person with the stigmatized condition 15 . Similarly, a recent conceptual model of stigma in visible skin diseases includes an external and an internal stigma dimension, while also taking the relationship between these dimensions, socio‐demographic and disease characteristics, and the impact of stigma into account 16 …”

“…These experiences often lead to people accepting and internalizing stigmatizing attitudes, 20 resulting in, for example, low self‐esteem and social withdrawal 21 . Stigmatization has been found to impair mental health, quality of life and life satisfaction – even independently of objective burden of the disease 16,22,23 . Assessing felt and enacted stigma is therefore important to identify the magnitude of the problem not only in individuals themselves but also in the general public.…”

Molecular diagnostics in dermatology: An online survey to study usage, obstacles and requirements in Germany

“…For the chronic inflammatory skin diseases psoriasis and eczema for example, more than a dozen U.S. Food and Drug Administration (FDA) approved targeted therapies are available already [14]. Despite this success story, patients do not yet optimally benefit from the therapeutics available, resulting in unnecessary hospitalization and costs for the health care system as well as in stigmatization and disability [15,16]. One reason for suboptimal treatment response is that a clear diagnosis cannot be made in all cases using conventional methods, and the response to specific therapies cannot be reliably predicted.…”

Molekulardiagnostik in der Dermatologie: Eine Online‐Umfrage zur Untersuchung von Nutzung, Hürden und Anforderungen in Deutschland

“…So gibt es für die chronisch entzündlichen Hauterkrankungen Psoriasis und Ekzem beispielsweise bereits jetzt mehr als ein Dutzend von der FDA zugelassene zielgerichtete Therapien [14]. Trotz dieser Erfolge profitieren Patienten aktuell noch nicht optimal von den verfügbaren Therapien, was zu unnötigen Krankenhausaufenthalten und Kosten für das Gesundheitssystem sowie zu Stigmatisierung und Einschränkungen führt [15,16]. Ein Grund für suboptimales Therapieansprechen ist, dass nicht in allen Fällen mit den konventionellen verfügbaren diagnostischen Methoden eine eindeutige Diagnose gestellt und auch das Ansprechen für spezifische Therapien nicht zuverlässig vorhergesagt werden kann.…”