This study examines predictors of caregiver distress among community-based palliative care clients. Analyses are based upon interRAI Palliative Care (interRAI PC) assessment data from palliative home care programs in three regions in Ontario, Canada.

The study sample involved all community-based palliative care clients in Ontario who were assessed with the interRAI PC as part of normal clinical practice during pilot implementation of the instrument between 2007 and 2009 (N = 3,929). The assessments were performed by trained case managers and were used as the basis for determining service needs to be addressed through services contracted from provider agencies. The main study outcome of interest was the presence of one or more indicators of caregiver distress: helper(s) unable to continue caring activities; primary informal helper expresses feelings of distress, anger, or depression; family or close friends report feeling overwhelmed by person's illness.

Caregiver distress was evident among about 22% of palliative home care clients. Multivariate analyses identified included clinical instability (Changes in Health, End Stage disease, Signs and Symptoms [CHESS] scale), depressive symptoms, cognitive impairment, and positive outlook as significant client-level predictors. Significant caregiver characteristics included hours of informal care. Three service use/provider variables were significant predictors of caregiver distress: the specific home care agency, hospitalizations in the last 90 days, and nursing visits.

Caregiver distress affects approximately one in five palliative care clients in the community. This may lead to a number of adverse outcomes for the caregiver and client. The experience of distress is affected by client, caregiver, and agency characteristics that are readily identified by the interRAI PC assessment instrument. The present results point to the need for a care planning protocol that may be used on a targeted basis for clients experiencing or at elevated risk of caregiver distress.