Health Related Quality of Life Impacts of Illness on Family Members and Care Givers

Considering the effects of an illness on caregivers in decisions


This research addresses an area of health often overlooked, how people surrounding an ill individual are affected by that person’s illness.  The study considers how illness affects parents, spouses, and family members, and how to accurately measure these effects so that they can be considered in decisions.  The ultimate goal of this research is to expand the definition of health to include a family or household-level focus rather than an individual-level one, and to consider public health interventions from this perspective.

There is mounting evidence in public health and medicine that illness affects people beyond the individual patient, through contagion, stress and anxiety-related illnesses, and the burden of care taking.  Such effects have been seen in studies of Alzheimer’s disease and cancer, screening of newborns, and with health behaviors such as smoking or obesity.  It is clear that medical interventions and health care programs should consider family members and others surrounding the patient when developing a response to illness, whether on the clinical level or in health policy.  This research systematically explores the effect of illness on surrounding individuals, and will investigate ways to accurately measure this effect for inclusion in decision making.  The goal is to improve the well being of patients and families by determining the ways in which illness affects the health related quality of life of surrounding individuals and identifying optimal ways to measure this effect for inclusion in health policy decision making.

The study uses a combination of publicly-accessible, national-level data on health and quality of life, and an on-line survey of a large sample of US adults to determine whether illness “spills over” to affect parents, spouses and family members of ill individuals.  The study is exploring how providing taking for an ill individual affects quality of life, and how this role affects care takers differently depending on their relationship to the ill individual.  A particular emphasis is the specific measurement techniques that can be used to provide data for economic evaluation of health programs and interventions, and particularly cost-effectiveness analysis.  If benefits of prevention or treatment are considered broadly as in this research, such as to the entire family instead of just the ill individual, conclusions about the value of an intervention might be different.  This study is investigating different methods of measuring how illness affects family members, including methods very specific to how benefits are valued such as whether they are valued by someone who actually has a sick child or spouse or rather by someone who is thinking hypothetically about such a situation which is the convention for cost-effectiveness analyses.  The research will provide results that are informative to analysts, researchers and policy makers.