The development of family quality of life concepts and measures

Abstract

Historically, intervention programmes in intellectual and developmental disabilities have targeted the individual's special needs independent of the family and environmental context. This trend has been changing over the past two decades. This paper presents a literature review on changing trends in family support and the development of family quality of life (FQOL) and intellectual disability from a construct to a theory. The evolution of research in quality of life from the perspective of the individual with the disability to the family is described. A description of the development of FQOL measures is included, specifically an introduction and comparison of the two leading comprehensive initiatives on measuring FQOL – international FQOL project and the FQOL initiative of the Beach Center on Disability, in the USA. This paper provides the conceptual background and context to the other papers presented in this special issue, which focus on FQOL measurement in specific contexts.