Attunement and alignment of people with schizophrenia and their preferred alternative decision-makers: An exploratory pilot study comparing treatment and research decisions

•We surveyed people with schizophrenia and their preferred alternative decision-makers.•We examined the attunement and alignment of perspectives between 20 dyads.•Both groups were attuned to four of six aspects of treatment decision-making.•Both groups were attuned on all six aspects of research decision-making.•Both groups were aligned in their views of ethically-salient aspects of every day life.

BackgroundSchizophrenia is a serious mental disorder that may affect the decisional capacity, and as a consequence, preferred alternative decision-makers may be engaged to help with clinical care and research-related choices. Ideally, alternative decision-makers will seek to make decisions that fit with the views and preferences of the ill individual. Few data exist, however, comparing the views of alternative decision-makers to those of individuals with schizophrenia.MethodsWe conducted a written survey with individuals with schizophrenia living in a community setting, and a parallel survey with the person whom the ill individual identified as being a preferred alternative decision-maker. Complete data were obtained on 20 pairs (n = 40, total). Domains queried included (a) burden, happiness, and safety of the ill individual and of his or her family in treatment and research decisions and (b) importance of ethical principles in every day life. Two-sided paired t-tests and graphical summaries were used to compare responses.ResultsIndividuals with schizophrenia and their linked preferred alternative decision-makers were attuned on four of six aspects of treatment decision-making and on all six aspects of research decision-making that we queried.ConclusionThe preferred alternative decision-makers overall demonstrated attunement to the views of the ill individuals in this small study. Ill individuals and their preferred alternative decision-makers were aligned in their views of ethically-salient aspects of every day life. These novel findings suggest that alternative decision-makers identified by ill individuals may be able to guide choices based on an accurate understanding of the ill individuals’ views and values.

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