ACCESS TO PATIENT ORGANIZATIONS' SERVICES OF PERSONS FROM CULTURAL MINORITIES

L. CartonSpondylis Association, Hopital Henri Mondor, Creteil, FranceNational and local organizations, and especially support groups, should be open to everybody suffering from or being interested in a health disorder. Persons belonging to ethnic minorities may face cultural hindrances such as spoken and/or written language, communication or living habits, beliefs, that may prevent them from benefiting from an organization's services at same level. As per our experience and internal interviews in a support group, they also may fear to be rejected by the group, and mostly do not know about organizations and their role, although they do need services - perhaps more than other patients - to fight against the disease.SPONDYLIS is a French patient association who acts in the field of Spondyloarthropathies and their consequences since 1998; weekly support meetings, conferences, written information are part or its patient-centered activities. These are open to all, but do they really satisfy the needs of persons originating from distant or recent immigration, and/or belonging to cultural minorities (as we call them in France rather than "ethnic")? Hindrances and loss of efficiency have been brought to light; some solutions could already be found before a survey is lead.Communication hindrances have been found first: patient organizations mostly do not exist in emigration countries, and immigrants do not know about our organization and its role. They could be better informed by the social services network further to proper action. Internet could be another solution as it is accessible even from abroad and at low cost. Patients must know that our services are free of charge, and that no discrimination is done regarding nationality, religion or other criteria. The action to undertake is to state these principles in our rules. Language is an obvious hindrance foreigners face in our support group meetings; the team now includes volunteers who act as translators in meetings and on the phone, in the most needed languages; documentation in other languages can be given by foreign associations. We also try to have basic information on disease translated into the most asked foreign languages when it is not available.Lack of adaptation of our activities is a second hindrance: More than objective and useful information, which is mostly asked for, persons belonging to cultural minorities often look for a friendly atmosphere and mutual aid from the association. Activity times and dates must not coincide with religious and cultural events so that they can attend our meetings. Such patients should be always asked about their needs, and proper action should be undertaken, which would add to association's experience. The consequence might be then that our own principles might not match their request, if it is an objection to mixity or equality for instance. Also, their expectations might not match our possibilities in the field of specific group-oriented actions.A solution to improve the access to patient organizations of persons belonging to cultural minorities is to integrate them as volunteers in the support group, and as members of the board of the patient association. They would be then in a position to examine the needs and undertake proper actions in communication and adaptation of association's services, or to start, if needed, developing specific services designed for patients belonging to cultural minorities.Citation: , volume , supplement , year 2004, page Session: Spondylarthropathies