Evaluating outcome domains assessing caregivers of individuals with mental illness: a review

In this article, we describe the properties and consider the outcome dimensions of a collection of self-administered questionnaires that assess caregivers of offspring with mental illness. To this end, we searched the MEDLINE, Web of Science, and PsycINFO databases, as well as reference lists of studies published between 1980 and 2012. We reviewed 43 instruments, and found multiple outcome domains, associated with either objective burden or subjective burden, or both. A number of tools captured additional negative aspects of caregiving (e.g., strain, stress, and worrying) as well as positive aspects (e.g., personal growth, strength, support, rewards, and satisfaction), supplemented by measures assessing caregivers' perceptions and attitudes toward their offspring with SMI (e.g., insight, stigma, and efficacy). This current review of existing measures and their specific domains contributes to a more comprehensive understanding of the caregiving experience and allows both clinicians and researchers to select the most appropriate measurement tools for their purposes.