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

Abstract

Objective: To identify facilitators and barriers associated with shared decision-making (SDM) in Australians affected by schizophrenia spectrum disorders.

Methods: We surveyed 78 participants with lived experience and held 12 in-depth interviews, including seven carers.

Results: 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.

Conclusion: 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.

Practice implications: 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.

Keywords: Recovery; Schizoaffective disorder; Schizophrenia; Shared decision-making; Stigma.