The Lived Experience of Psoriasis Patients from Social Stigma and Rejection: A Qualitative Study

Ghorbanibirgani, Alireza; Fallahi-Khoshknab, Masoud; Zarea, Kourosh; Abedi, Heidarali

doi:10.5812/ircmj.27893

Cited by 28 publications

(51 citation statements)

References 29 publications

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“…The emotional burden of skin diseases is enormous, and has a negative impact on QoL. [31] Ghorbanibirgani et al found that patients with psoriasis experienced feelings of stigma that led to a weakening of the self-concept, [32] which is consistent with our findings. Ghorbanibirgani et al further revealed that patients with psoriasis were rejected by others, causing them a painful experience and leading to the decision not to disclose their disease.…”

Section: Discussionsupporting

confidence: 92%

The journey of having scabies–A qualitative study

Trettin

Lassen

Andersen

et al. 2018

JNEP

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Background and objective: Scabies is considered to be a common skin infection in the field of dermatology, but it is also, by the World Health Organization referred to as a neglected disease. It can cause complications such as secondary infections linked to the development of glomerulonephritis and chronic kidney disease. Furthermore, scabies is associated with stigma, shame and social isolation. To date no qualitative study, has explored this area in depth. The aim of this study was to gain an in-depth understanding of the lived experiences of patients diagnosed with scabies.Methods: A phenomenological-hermeneutic approach was applied and semi-structured interviews were conducted with 10 participants with scabies. Data were analyzed according to Ricoeurs’ theory of interpretation: naïve reading, structural analysis and critical interpretation and discussion.Results: The study revealed that patients were affected by uncontrollable and unbearable itching, which caused insomnia and distress, and lead to coping strategies to bring relief. Scabies was experienced as a never-ending journey, characterized by misdiagnosis, a long period of repeated treatment, and lack of information. Not knowing whether the disease had been cured resulted in feelings of insecurity and powerlessness. Scabies had an impact on everyday life caused by social withdrawal and due to feelings of shame, guilt and fear of rejection.Conclusions: Having scabies is a journey that consists of uncertainty and is characterized by misdiagnosis, long period of treatment and lack of knowledge. Having scabies can be stigmatized, causing loneliness and social withdrawal. Patients with scabies are in need of care, support and information regarding physical, emotional and social well-being.

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Section: Discussionsupporting

confidence: 92%

The journey of having scabies–A qualitative study

Trettin

Lassen

Andersen

et al. 2018

JNEP

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“…This has been proven by measured assessments of the general population (e.g. FORSA surveys), people affected as well as many descriptions by patient organizations …”

Section: Introductionmentioning

confidence: 99%

“…FORSA surveys), 25 people affected as well as many descriptions by patient organizations. [26][27][28] Consensus exists that there is comparatively little evidence on the effectiveness of destigmatization measures in skin diseases. Experiences in anti-stigma efforts of other chronic diseases, e.g.…”

Section: Introductionmentioning

confidence: 99%

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

Augustin

Mrowietz

Luck-Sikorski

et al. 2019

Acad Dermatol Venereol

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Background Even today, a substantial number of individuals with visible skin diseases still suffer from incomprehension and stigmatization. About 10 million people are affected by such diseases in Germany. The WHO strongly urges member states to take measures against stigmatization in skin diseases. Objectives Objectives are the development of an action programme to raise awareness and address stigmatization. Therefore, conception, development and testing of interventions for the destigmatization of persons with skin diseases in Germany will be carried out. Methods A series of actions addressing decision makers, politicians and the Federal Ministry of Health were initiated, all based on the World Health Assembly (WHA). Argumentation was largely based on data from health services research. Supported by the Federal Ministry of Health, a concept against stigmatization was developed by an expert consortium of researchers, dermatologists and patients. Specific strategies of structured destigmatization between those affected and those not will be developed and scientifically evaluated. Results The activities addressed to politics were – to a large extent – successfully and financially supported by a 3‐year programme (2018–2020), designed to develop interventions against stigma. It was funded by the Federal Ministry of Health. The project includes conception and development, intervention and evaluation, data analyses and development of a long‐term concept. Conclusions The WHO's call against stigmatization in psoriasis (resolution WHA67.9 and global report on psoriasis 2016) was taken into account and developed into a destigmatization programme supported by the German government and German politicians. This has been achieved by successful collaborations between dermatologists, researchers, patients and policymakers. Next step will be the testing of interventions in situations and surroundings, where stigmatization usually occurs. The data will be used for the implementation of a long‐term concept that can be used to continue destigmatization in Germany far beyond the project′s initial phase.

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“…Several psychological constructs have been studied in clinical samples of patients with psoriasis, e.g., depression [6], anxiety [7], embitterment [8], stigmatization [9], isolation [10], quality of life [11] and body image [12,13]. All these studies report worse outcomes for patients with psoriasis than for controls, i.e., more depression, more anxiety, more embitterment, more stigmatization, more isolation, less quality of life and worse body image.…”

Section: Introductionmentioning

confidence: 99%

The Mediator Role of Body Image-Related Cognitive Fusion in the Relationship between Disease Severity Perception, Acceptance and Psoriasis Disability

Almeida

Leite

Constante

et al. 2020

Behavioral Sciences

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Psoriasis is a long-term skin disorder without a cure, whose patients are particularly susceptible to mental health diseases. Using a sample of patients diagnosed with psoriasis, this study aimed to: (1) identify the clinical and positive psychological variables that contribute the most to psoriasis disability and (2) assess the mediator role of body image-related cognitive fusion in the relation between disease severity perception and acceptance and self-compassion, on one hand, and psoriasis disability on the other. This is an initial cross-sectional exploratory study, with 75 patients diagnosed with psoriasis (males 52%; mean age 54.99 ± 13.72) answering a sociodemographic and a clinical questionnaire, the Psoriasis Disability Index (PDI), the Cognitive Fusion Questionnaire—Body Image (CFQ-BI), the Acceptance and Action Questionnaire—II (AAQ-II), and the Self-Compassion Scale (SCS). Descriptive and inferential statistics were used to characterize and assess the measures and the final model used. Through path analysis and a hierarchical multiple linear regression, it was found that the variables that significantly contributed to psoriasis disability were years of education, impact on social life and body image, explaining 70% of the variance. Body image-related cognitive fusion was a significant mediator in the relationship between disease severity and acceptance, and psoriasis disability. The implications of this study are considered to be extremely relevant, since it will allow additional information to be provided to psoriasis patients, appropriated to their educational level, aiming to reduce distorted perceptions of disease severity and intervene in the ability to accept this specific and important chronic health condition.

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The Lived Experience of Psoriasis Patients from Social Stigma and Rejection: A Qualitative Study

Cited by 28 publications

References 29 publications

The journey of having scabies–A qualitative study

The journey of having scabies–A qualitative study

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

The Mediator Role of Body Image-Related Cognitive Fusion in the Relationship between Disease Severity Perception, Acceptance and Psoriasis Disability

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