Perceived Social Isolation Among Family Caregivers of Persons with Mental Illness

Background and Purpose:  Families now provide considerable caregiving for individuals with mental illness, particularly those with serious and persistent mental illness. Research has shown that such caregiving can carry with it significant financial and psychological burden, however, little attention has been paid to how such burden can lead to curtailment of caregivers’ personal time and perceived social isolation.  To fill this gap, we examine the association of factors in four domains with perceived social isolation among caregivers: 1) Care recipient factors, 2) Caregiver factors, 3) Caregiving factors, and 4) Treatment-related factors.  The primary objective of the present analysis is to determine the extent to which proposed factors are associated with perceived social isolation among caregivers.  As it has been previously found that females are more likely to take on caregiver roles and experience more burden in said roles, the secondary objective is to assess the extent to which the relationship between caregivers being female and perceived social isolation is mediated through caregivers having less time for themselves than preferred.

Methods: This study utilizes a cross-sectional design with survey data collected from the National Alliance for Caregiving.  The subsample used in the present analysis is 1,505 family caregivers of adults with mental illness, recruited from across the U.S. in September 2015.  A series of multivariate logistic regression models were conducted to examine the association of factors with perceived social isolation among caregivers.  Sobel testing was performed to assess mediation.

Results: Fifty percent of caregivers (n = 747) perceived being socially isolated.  While controlling for significant covariates, perceived social isolation was positively associated with care recipients being reported to have a serious mental health condition, care recipients and caregivers co-residing, concealment of care recipients’ mental illness by caregivers (reflecting the impact of stigma), and caregivers having less time for themselves than preferred.  Inversely, perceived social isolation was negatively associated with care recipients being able to rely on persons other than primary caregivers for help, caregivers being satisfied with the amount of community mental health services, and caregivers having received education or training on providing caregiving.  The variable most strongly related to perceived social isolation was caregivers having less time for themselves than preferred.  Female caregivers were more likely to experience perceived social isolation; however, this relationship was mediated through caregivers having less time for themselves than preferred.

Conclusions and Implications:  Mental illness affects not only the person with mental illness, but also their family members, particularly those in caregiving roles.  The results of this study underscore the importance of social workers mobilizing/providing mental health services for persons with mental illness and psychoeducation for family members, particularly regarding providing caregiving.  Partial hospitalization programs, respite care, and socialization centers can relieve burden for caregivers thereby providing them with time for self-care and social connections, potentially reducing perceived social isolation.  Finally, social workers should work to decrease stigma of mental illness as doing so is likely a necessary component of combatting social isolation among caregivers.