Knowledge Families Hold: Co‐Production and Co‐Research With Mental Health Family Carers in Understanding Experiences During the COVID‐19 Pandemic

From its inception, this project was co-produced and co-designed with mental health family carers and service users based on their expertise in understanding their experiences and ways to best explore these to the benefit and wellbeing of families in distress. The academic research partners both have active experience of supporting people with mental health challenges. Through each of the identified phases, lived experience expertise (family carers and service users) co-designed and co-facilitated the process. At times leading the process, such as in recruitment strategies, and at other times acting as guides. Guidance was provided by lived experience expertise in reflecting upon the literature review to understand what had been researched internationally and what would be important to understand in Australia. The academic partners advised on the possible processes for data collection, and the lived experience experts decided on the methodology based on that advice. Both the focus group and survey questions were developed and scrutinised from the perspective of the service users and carers in the project team. Difficult conversations were handled with respect, service users within the project team gently addressed areas of enquiry that may suggest stigma or feed into societal stereotypes of people with mental health challenges. Carers were able to consider the wording of questions to still be able to address areas of concern including domestic violence within the family unit and suicide. Dissemination strategies were planned together with the carer and service user representatives being co-presenters at conferences. The report for submission to the National Mental Health Commission (Australia) was written and reviewed with all partners. A committee of service users and carers, alongside the academic partners, planned the launch of the report in August 2023. The co-authorship of peer-reviewed articles has included family carers and service users from the National Mental Health Consumer and Carer Forum.