Snails in bottles and language cuckoos: an evaluation of patient information resources for South Asians with osteomalacia.

Abstract

To assess the acceptability for use of information on osteomalacia for South Asian patients. Ten focus groups of South Asian persons speaking Bengali, Gujarati, Hindi, Punjabi and Urdu (one male and one female group for each language) were used to evaluate the written (leaflets) and spoken information (CD) on osteomalacia for South Asian patients produced by the Arthritis Research Campaign (ARC). Focus group discussion was facilitated by community-based workers using the Social Action Research Method. A subsidiary evaluation of the information was conducted by a questionnaire-based survey sent to British Society of Rheumatology/British Health Professionals in Rheumatology (BSR/BHPR) members and others who had requested such materials from ARC in the past. Evaluation by focus groups revealed that there were potential difficulties relating to the understanding of the information leaflets and CDs and problematic issues regarding the quality of translation and pronunciation. Evaluation by BSR/BHPR members and others who had requested such material was that although the information was culturally appropriate, there were some weak areas such as mispronunciation, the quality of translation and specific customs. Healthcare information resources for minority ethnic groups has traditionally been developed depending upon the needs of the community, the language spoken and cultural norms. Such information is regarded as 'culturally sensitive'. However, an additional dimension is required. Information should be evaluated by the community and also specific users in order to determine its acceptability. This test of 'cultural competence' can ensure that such information has real practical value. An iterative evaluation process with feedback and refinement of information resources for minority ethnic groups is essential.