Health-related quality of life

Abstract

Quality of life (QOL) is an overarching goal individuals and families aspire to. Health represents a critical aspect of QOL, and without good health amongst all individuals in a family, life can become problematic. Consequently Health-related Quality of Life (HRQOL), and Family Quality of Life (FQOL) are important contributors to a person's overall QOL. This chapter builds on information from preceding chapters and illustrates innovative methods parents and caregivers have devised to enhance HRQOL in people with intellectual and developmental disabilities (I&DD), and to improve FQOL. It also encompasses strategies developed by the author, both as a medical practitioner working with people with disability and their families, and as the mother of a female with multiple disabilities including autism, I&DD, and severe epilepsy. The author selected conditions which have major impact on the person with I&DD, family and caregivers, using vignettes to graphically illustrate aspects of HRQOL. Some comments are not yet found in publications, as they relate to personal experiences or observations as well as personal information from parents and caregivers.