Quality of Life—Challenges to Research, Practice and Policy

In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 14, Heft 1, S. 7-14

Abstract

AbstractQuality of life (QOL) has been developing in the field of IDD since the early 1980s, and ever since there have been research, models, and theoretical constructs along with many recommendations. Ignored in its early development, QOL is now seen as important for support and intervention. The research has resulted in new insights yet there remain many challenges, three of which are discussed in this article. (1) Much QOL research requires the acceptance of parent and allied commentary that is regarded as subjective and frequently carries less weight than objective evidence. This can raise questions across disciplines regarding the validity and therefore the value of QOL in the field of research, practice, and policy. (2) Family quality of life (FQOL) research, which is an outgrowth of QOL in IDD, has resulted in a number of questions concerning our perception and management of family challenges. One is our understanding or lack of understanding of the process of inclusion, which is discussed suggesting the need for a much more clear articulation of exclusion and inclusion and its relevance to research and application within a QOL context. (3) QOL involves an holistic approach and much of this approach has been researched and applied in the field of IDD. It is posited in this article that the QOL approach should now be seen as a paradigm for research, policy, and intervention in which other procedures can be explored and addressed. To do so the paradigm requires further development and integration and an understanding of its specificity and breadth of potential application. Each of these issues is discussed and recommendations are put forward for action under the headings of Perceptual and Objective Data, Education of Personnel, Further Research and Application, and Policy Integration.