Family burden and functional assessment in the Swedish CLIPS-study: do staff and relatives agree on individuals with psychotic disorders’ functional status?

Purpose In this study, the individuals with psychotic disorders’ daily life function was investigated on six dimensions considering their relations to family burden. Functional ratings carried out by relatives and staff were also compared. Methods Totally 88 relatives, to as many individuals diagnosed with a psychotic disorder, participated in this study. Relatives were to rate their own perceived burden and their ill relatives’ physical functioning, personal care skills, interpersonal relationships, social acceptability, activities, and work skills. The outpatient staff, in all 24 case managers also rated the patients’ functional level on the same assessment tool as did the relatives. Results Most dimensions of patients’ everyday functioning were highly correlated to relatives’ burden. The two functional dimensions ‘‘interpersonal relationships’’ and ‘‘activities’’ were best at classifying burden when rated by relatives. Also, comparing independent functional ratings by relatives and staff showed that despite great agreements on most dimensions, they differed significantly on ‘‘social acceptability’’ where relatives rated the function to be poorer and ‘‘activities’’ where relatives rated the function to be better. Conclusions Relatives, who perceive individuals with a psychotic disorder to be limited in their ability to interpersonal relationships and limited in their ability to activate in everyday life, are more likely to perceive a higher burden. Even though staff and relatives mainly agree on the patients’ functional ability, they often differ in ratings regarding patients’ social acceptability and ability to activate in everyday life. This should be worth considering in clinical practice as well as in future research