"I think that everybody should be involved": What informs experiences of shared decision-making in supporting people living with schizophrenia spectrum disorders?

Abstract

To identify facilitators and barriers associated with shared decision-making (SDM) in Australians affected by schizophrenia spectrum disorders. We surveyed 78 participants with lived experience and held 12 in-depth interviews, including seven carers. A multiple linear regression model identified two independent variables significantly associated with degree of SDM: Personal Wellbeing Index scores (ß = .32, t = 3.3, p = .001) and treatment satisfaction rating (ß =.46, t = 4.7, p < .001), indicating that higher personal wellbeing and higher treatment satisfaction were significantly related to higher degree of SDM. Two key themes were identified through interview data: a complex pathway to SDM and impacts on wellbeing. Sub-themes included: self and carer characteristics, holistic care, education and knowledge, and power balance. Generally, participants reported a desire for SDM, noting that healthcare professionals inconsistently involve them in treatment decisions. SDM is associated with treatment satisfaction and personal wellbeing among people living with schizophrenia spectrum disorders, but can be difficult to implement due to a range of challenges. There is a need to improve SDM in this population by decreasing stigma and discrimination, balancing power in consultations, increasing access to holistic treatment, and improving education and knowledge.