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.