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

Abstract 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.