Mark RD Johnson, Jennifer Hughes, Habib Naqvi, Krysia Saul, Heidi Williamson, Nichola Rumsey Rumsey, Rodger Charlton
There is a paucity of research exploring the views of different cultural and ethnic groups about individuals with a visible difference. This research is a priority area given that issues of disfigurement, stigma and shame may be particularly bound to cultural and ethnic membership (Papadopoulos et al, 1999). This paper examines the attitudes of South Asian communities in the UK towards individuals with a disfigurement. It is based on thematic analysis of material generated from nine focus group interviews with South Asian community members. A number of themes emerged from the focus groups, including definitions of disfigurement, a sense of family burden and shame limiting the marriage and social opportunities of the individual, culturally specific beliefs about the causation of disfigurement, and reactions from the community. It also emerged that there was a lack of knowledge about the support services available, and an association of visible difference with mental and physical disability. Religious beliefs and cultural practices cut across the majority of themes that emerged. These spiritually derived beliefs added meaning both to the cause and origin of the disfigurement and to the consequences of that difference. There is evidence of generational differences in views about issues such as appearance, which seem to emerge from westernisation and the influence of the media. The findings highlight the need to inform healthcare policy and implement interventions to provide appropriate psychosocial support and care for people living with a disfigurement. These include increasing knowledge and understanding of disfigurement in the South Asian community, and raising awareness of support services.
