The ITINERIS scale on the rights of persons with intellectual disabilities: development, pilot studies and application at a country level in South America.

BACKGROUND: The ITINERIS scale on the rights of persons with intellectual disabilities (ISRPID) was developed to measure the extent to which people with intellectual disabilities (ID) exercise their rights. METHOD: The ISRPID was produced through a virtual Delphi group with 37 professionals and relatives of people with ID from four continents and was refined in small pilot groups with persons with ID in Argentina. It has 30 items and can be self-administered or completed by a proxy. Versions in three languages (English, Spanish and Portuguese) are available. Following its development, the ISRPID was applied in Chile to 705 persons with ID and to a control group of 524 college students without ID. RESULTS: Statistical analysis showed that family relationships, community participation, living arrangements and level of disability affect the experience of rights among people with ID. Importantly, with structured supports, people with ID appear able to exercise their rights to a level comparable to that of their peers without ID. CONCLUSIONS: With further development, the ISRPID may be an appropriate scale to monitor the exercise of rights contained in the United Nations Convention on the Rights of Persons with Disabilities at an individual or group level.

Quality of life from the point of view of Latin American families: a participative research study.

BACKGROUND: To date, little research has focused on what factors constitute a quality of life (QOL) among Latin American families with a member who is intellectually disabled. METHOD: Total 180 Latin American families cooperated in a participative research project. During 18 months, the families and a team exchanged information about their QOL by means of questionnaires and grids that the families analysed and completed at their homes. RESULTS: In Latin America, families attribute utmost importance to interpersonal relations and emotional well-being. In addition, results identified a number of QOL domains and indicators reflective of family-centred QOL among Latin American families. A tool with 42 indicators grouped in six areas was obtained. CONCLUSIONS: Quality of life is a concept that has meaning and structure which varies considerably from culture to culture. A topologic QOL model is presented to facilitate the cross-cultural understanding of the QOL construct.