Feeling responsible: Family caregivers’ attitudes and experiences of shared decision-making regarding people diagnosed with schizophrenia: A qualitative study

To explore the attitudes and experiences of family caregivers concerning their involvement in shared decision-making regarding people diagnosed with schizophrenia. This study used a qualitative descriptive design involving face-to-face semi-structured interviews. Both convenience and purposive sampling were used to recruit family caregivers until no new insights were generated (n = 15). An inductive thematic analysis method was used. Primary results of analysis of the attitudes and experiences included four main themes with nine subthemes generated from the data: (1) feeling obligated; (2) playing functional roles: i) providing social and financial support, ii) acting as a liaison, and iii) overviewing treatment adherence; (3) Experiencing multiple challenges i) limited treatment options, ii) insufficient information at health services iii) traditional acceptance of authoritative advice; and (4) living under pressure: i) feeling exhausted, ii) being socially isolated and iii) worrying about the future. Due to their caregiving responsibilities, family caregivers facilitated shared decision-making in various ways. However, they perceived that their involvement was limited to practical tasks and attributed this to the lack of access and support for engagement, resulting in aggravated caregiving burden. Family caregivers need to be recognized as partners and core stakeholders, to be involved in shared decision-making and better supported in caregiving. To achieve shared decision-making, decision aids are needed to support family caregivers for caregiving in collaborative care models.