Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

Research in the field of disability should include the voice of individuals with intellectual disabilities (ID), since these individuals are considered to be the experts on their own experiences. Quality of life (QoL) is a worldwide concept that has been studied in many areas, including ID. Since about the year 2000, researchers have studied QoL of families in many countries around the world, but this body of research has mostly reflected the views of the main caregiver of the person with ID. The major purpose of this study was to give voice to persons with ID, and to explore their perspectives about their FQoL. Four focus groups were conducted with 17 men and women with ID (mild and moderate), aged between 16 and 53 years old. Full transcriptions of the focus group discussions were analyzed with the NVivo 10 software. The findings showed that persons with ID identify family relationships as the most important dimension for FQoL and that some differences between younger and older participants existed. Ethical and practical challenges, as well as the implications for research and intervention are discussed. The inclusion of individuals with ID as informants in research is a way to value their point of view, empower them, and recognize the knowledge that they are able to bring to research.