Universiteit Leiden

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Research project

Topic: Stigmatization in patients with chronic health conditions

Imagine that you have a chronic skin condition, characterized by red patches of itchy, scaly skin. You regularly notice people staring at your skin and sense their reluctance to shake your hand. Or imagine that you have Parkinson's Disease, causing your hands to tremble and making it difficult for you to walk steadily. Due to these symptoms people are wary of you and sometimes accuse you of being drunk. These are examples of stigmatisation and depending on the condition up to 70-90% of patients with chronic health conditions experience this. Perceived stigmatisation causes significant distress in patients and is related to impairments in mental and physical health. Despite this, research on stigmatisation and its predictors and underlying mechanisms in chronic health conditions is still scarce and few evidence-based intervention opportunities exist. This research line focuses on increasing our knowledge on how stigmatisation impacts patients with chronic health conditions, to determine which factors influence the extent and experience of stigmatisation, and to explore underlying mechanisms.

Sylvia van Beugen

Description of topic

The aim of this research line is to elucidate the prevalence, influences, and underlying processes of stigmatisation in diverse chronic health conditions. In order to gain insights into influencing factors and to determine appropriate target groups for evidence-based intervention strategies, we examine a broad range of predictors of stigmatisation in both patients and the general population. Furthermore, we focus on expanding our knowledge on the impact of stigmatisation on patients’ daily lives, by e.g. uncovering the extent of stigmatisation in diverse groups, and by determining its effects on physical and psychological wellbeing in cross-sectional, experimental, and longitudinal studies.

Our goal is to understand how stigmatisation impacts the lives of patients with chronic health conditions, and to determine which factors influence the extent and experience of stigmatisation. By combining conventional (e.g., self-report questionnaires) and innovative (e.g., indirect measures of implicit processes) methodologies, and bridging gaps in the current literature (e.g., using longitudinal designs and diverse samples), we work towards better understanding of stigmatisation in chronic health conditions. The knowledge gained from this research line informs the development of evidence-based destigmatisation strategies for patients and society.

Current research topics include an examination and comparison of the extent of stigmatisation of patients with chronic skin conditions and Parkinson's Disease within the general population, including an evaluating of stigmatizing attitudes towards these groups. Furthermore, the influence of the COVID-19 pandemic on stigmatising attitudes is examined. Another large-scale project involves an international collaboration examining perceived stigmatisation in dermatological conditions in 16 countries.

Van Beugen, S., Van Middendorp, H., Ferwerda, M., Smit, J. V., Zeeuwen‐Franssen, M. E. J., Kroft, E. B. M., ... & Evers, A. W. M. (2017). Predictors of perceived stigmatization in patients with psoriasis. British Journal of Dermatology, 176(3), 687-694.

van Beugen, S., Maas, J., van Laarhoven, A. I., Galesloot, T. E., Rinck, M., Becker, E. S., ... & Evers, A. W. (2016). Implicit stigmatization-related biases in individuals with skin conditions and their significant others. Health Psychology, 35(8), 861.

Dalgard, F. J., Bewley, A., Evers, A. W., Gieler, U., Lien, L., Sampogna, F., ... & Kupfer, J. (2018). Stigmatisation and body image impairment in dermatological patients: protocol for an observational multicentre study in 16 European countries. BMJ Open, 8(12), e024877.

Dimitrov, D., Matusiak, Ł., Evers, A. W. M., Jafferany, M., & Szepietowski, J. (2019). Arabic language skin-related stigmatization instruments: Translation and validation process. Advances in Clinical and Experimental Medicine, 28(6), 825-832.

De Jager, M. E., De Jong, E. M., Evers, A. W., Van De KERKHOF, P. C., & Seyger, M. M. (2011). The burden of childhood psoriasis. Pediatric Dermatology, 28(6), 736-737.

Evers, A. W. M., Duller, P., Van De Kerkhof, P. C. M., Van der Valk, P. G. M., De Jong, E. M. G. J., Gerritsen, M. J. P., ... & Kraaimaat, F. W. (2008). The Impact of Chronic Skin Disease on Daily Life (ISDL): a generic and dermatology‐specific health instrument. British Journal of Dermatology, 158(1), 101-108.

Kool, M. B., van Middendorp, H., Boeije, H. R., & Geenen, R. (2009). Understanding the lack of understanding: invalidation from the perspective of the patient with fibromyalgia. Arthritis Care & Research, 61(12), 1650-1656.

Kroft, E. B., de Jong, E. M., & Evers, A. W. (2009). Psychological distress in patients with morphea and eosinophilic fasciitis. Archives of Dermatology, 145(9), 1017-1022.

Lu, Y., Duller, P., Van Der Valk, P. G. M., & Evers, A. W. M. (2003). Helplessness as predictor of perceived stigmatization in patients with psoriasis and atopic dermatitis. Dermatology and Psychosomatics/Dermatologie und Psychosomatik, 4(3), 146-150.

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