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Those who care for people with schizophrenia and substance use disorders (PLS-SUD) are faced with the complex demands of a long journey to recovery. For the carers, this translates into specific needs related to various areas of their lives. However, few studies have contributed to the understanding of these carers’ needs. The purpose of this qualitative evaluative study is to identify, understand and prioritize the needs of PLS-SUD carers in the context of intervention design from the viewpoint of carers themselves (n = 9), those they were accompanying (n = 5) and other key actors involved (n = 10).

A design of action research was employed. Data analysis was done in three phases: concept map analysis, thematic analysis and transversal analysis of the results from two focus groups, 28 interview transcriptions and a logbook.

Over 60 needs were identified. After review, 39 of those were selected for prioritization. For needs related to the carers’ role as clients of the health-care system, the committee prioritized the needs for support, sharing with other carers and improving their own well-being. For the role of supporter, knowledge about substance use disorders and their interactions with psychotic disorders as well as skills such as communication and problem resolution were considered priorities. Needs to be prioritized relating to the role of partner were fewer.

The results of this study highlight the diversity and complexity of the needs experienced by carers.

This is among the first needs surveys carried out by stakeholders to describe the needs of PLS-SUD carers.