HOW ILLNESS AFFECTS FAMILY MEMBERS: DOMAINS OF WELL-BEING AFFECTED BY “SPILLOVER”

Purpose: Spillover effects of illness on family members can be substantial and may alter economic evaluations of interventions/treatments. The purpose of this study was to identify the domains of well-being that are affected when a family member has a chronic condition, to inform measurement of spillover for inclusion in decision analysis.   

Methods: Telephone interviews were conducted in February 2012 with 49 individuals, 14-86 years of age. Respondents’ family members had arthritis, Alzheimer’s disease/dementia, cancer, cerebral palsy, or depression. The sample was purposively selected to include balance across the family member’s condition and the respondent’s relationship to the family member (child, spouse or parent). The semi-structured interview queried respondents on whether and how having an ill relative affected their health and well-being.  Interview data were analyzed using thematic analysis.   

Results: Having an ill relative affects family members’ physical and psychological health, non-heath domains of life, and family members’ role and relationship with the ill relative. Across types of conditions and family members, somatic effects were least likely to be mentioned when individuals described spillover, psychological effects were most likely to be mentioned. Psychological effects were described as increased stress or anxiety, increased worry or fear, and feelings of frustration, impatience, sadness or depression. Non-health domains affected by the illness were most commonly described as changes in daily activities, taking on caregiving responsibilities, and financial stress; also reported were feeling confined to home to care for the ill relative, and the loss of former activities with ill relative.   Family members reported changing roles with their ill relative and changing relationships, sometimes for the better. Nearly all reported that other family members were affected by the ill relative’s illness as well. Many described adaptation to spillover, with increased understanding of illness and coping with responsibilities over time.   

Conclusions: Spillover of illness onto family members encompasses a wide range of domains of health and well-being, extending beyond those included in many existing health related quality of life measures. To quantify these effects for inclusion in economic evaluations, measurement techniques must capture this spectrum of effect.  Psychological and non-health domains are underrepresented in existing multiattribute utility instruments suggesting that direct measures of utility or new/alternate techniques might be more useful to quantify spillover effects.