Response Shift as a Possible Obstacle in Assessing Perceived Quality of Life and Burden of Care in Informal Caregivers of Individuals with Schizophrenia: A Narrative Review

Schizophrenia is one of the most common and devastating mental disorders. Due to the possibility of relatively robust control over clinical symptoms, the focus of care for schizophrenia patients has shifted from institutionalized to community-based outpatient treatment options. While this change in paradigm allows affected individuals to socialize and take part in everyday activities, it has also increased the burden on family caregivers. At the same time, the interpretation of self-reported quality of life scores can be challenging due to known influencing factors like changes in internal standards, values, and goals. We present the theory of response shift as an adaptive mechanism that summarizes these complex changes and explains the seemingly contradicting long-term findings regarding quality of life ratings in informal caregivers. This state-of-the-art narrative review was undertaken to give an overview of the most critical factors that negatively impact the quality of life of caregivers and to summarize the current evidence, if any, of the response shifts in nonprofessional family caregivers. To our knowledge it is the first time that response shift and its impact on quality of life in family caregivers of patients is reviewed in this way.