Stigma in the face of cancer disfigurement: A systematic review and research agenda

Abstract

Introduction: An emerging body of work has reported on the psychological impact of disfigurement on cancer patients; however, the extent of research focusing on stigmatisation in this context is unclear. This review aimed to evaluate how stigma associated with disfigurement impacts on cancer patients. Methods: A systematic review of literature was conducted using SCOPUS, Web of Science, MEDLINE and PubMed databases. Articles were included if they described a qualitative or quantitative study that investigated the impact of stigma and disfigurement on individuals with cancer and/or their families. Included studies were appraised for methodology and narratively synthesised. Results: Of the 16 studies which met the inclusion criteria, ten were qualitative and six were quantitative. Publication dates ranged from 1994 to 2020. Results highlighted the varying impact of felt and enacted stigma in people with cancer disfigurement. While individuals cope with stigma in different ways and outcomes can sometimes be positive, most articles documented a negative impact to well-being including emotions such as disgust and shame. Conclusion: This review identified negative and (sometimes) positive consequences of disfigurement and stigma on cancer patients; however, the main finding is that relevant research is in its infancy. Several areas of future research are warranted.

Effects of Alexithymia to Stigma of Patients with Lymphedema

“…The score of social exclusion was the highest (21.07 ± 3.80), followed by economic discrimination (15.65 ± 3.94) and social isolation (15.56 ± 3.05), and the score of internal stigma was the lowest (8.09 ± 1.86). It is basically consistent with the systematic review and research of Reynolds LM et al [17] on the stigma of cancer patients after physical and mental trauma. Possible reasons for the highest score of social exclusion in this study: most of the patients in this study are women and in-service personnel, who pay too much attention to the external image, because the treatment of lymphedema requires bandage compression and bandage, which is exposed and cannot be concealed, which affects social and work, and the stability of work is impacted and challenged.…”

“…It consists of 3 dimensions and 20 entries. Lack of ability to recognize emotion (1,3,6,7,9,13,14); Lack of ability to describe emotions (2,4,11,12,17); Extraversion thinking (5,8,10,15,16,18,19,20). The items of the scale adopt the link scoring method, in which 5 items such as 4, 5, 10, 18 and 19 are scored in reverse.…”

“…It is used to evaluate the level of stigma in cancer and AIDS patients. The table includes 24 items, which are divided into 4 dimensions, including social exclusion (2,5,6,7,11,17,19,20), economic discrimination (8,9,10,15,18,22,24), internal stigma (12,13,14), and social isolation (1,3,4,16,21,23). Pan et al [15] translated into Chinese (Taiwan region) version.…”

Telling the story of intersectional stigma in HIV‐associated Kaposi's sarcoma in western Kenya: a convergent mixed‐methods approach

“…KS remains one of the most common HIV-associated cancers, even in the era of antiretroviral therapy (ART) [12]. KS often presents with highly visible skin lesions, putting people at risk for stigmatization [13]. The intersectionality of HIV, cancer, and skin disease-related stigma in people with HIVassociated KS is of particular interest, as all three conditions are known to be associated with stigma [10,13].…”

“…KS often presents with highly visible skin lesions, putting people at risk for stigmatization [13]. The intersectionality of HIV, cancer, and skin disease-related stigma in people with HIVassociated KS is of particular interest, as all three conditions are known to be associated with stigma [10,13]. The manifestations of these three intersecting stigmas have the potential to impact healthcare engagement at many levels, including delayed diagnosis and treatment of KS.…”