Family quality of life application among older caregivers of adults with intellectual/ developmental disabilities

Abstract

Family quality of life (FQOL) is a multidimensional social construct that can be used to enhance a family's well-being by providing a framework to plan interventions and evaluate outcomes. Although researchers and policymakers see value in the FQOL domains and dimensions, families and practitioners are often skeptical of lengthy evaluations and aggregate scores. Furthermore, many practitioners find that family caregivers who require support and services overwhelmingly focus on the family member needing the most care. In doing so, they perceive their situations in a “spaghetti-like” way. This strong focus on one aspect of the situation, or one “spaghetti” strand, can result in conversations about planning and implementing interventions becoming cyclical, like a messy tangle of strands. The FQOL lens can be used in intervention planning to transform overlapping spaghetti-like thoughts into a waffle-like system of interconnected and compartmentalized thoughts. The purpose of this paper was to describe the individual-level application of the FQOL theory to plan and evaluate the benefits of a peer-mediated family empowerment project for aging caregivers of adults with intellectual/ developmental disabilities in Michigan, USA. The study provides examples of how individual-level FQOL evaluation at pretest informed the development of individualized action plans that focused on the strengths, desires, and challenges of 100 aging families in this statewide project.