Abstract
BackgroundInvolving patients, service users, carers and members of the public in research has been part of health policy and practice in the UK for the last 15 years. However, low‐income communities tend to remain marginalized from the co‐design and delivery of mental health research, perpetuating the potential for health inequalities. Greater understanding is therefore needed on how to meaningfully engage low‐income communities in mental health research.ObjectivesTo explore and articulate whether and how an engaged research approach facilitated knowledge coproduction relating to poverty and mental distress.SettingA reflective evaluation of community and researcher engagement in the DeStress study that took place in two low‐income areas of South‐west England.DesignReflective evaluation by the authors through on‐going feedback, a focus group and first‐person writing and discussion on experiences of working with the DeStress project, and how knowledge coproduction was influenced by an engaged research approach.ResultsAn engaged research approach influenced the process and delivery of the DeStress project, creating a space where community partners felt empowered to coproduce knowledge relating to poverty‐related mental distress, treatment and the training of health professionals that would otherwise have been missed. We examine motivations for involvement, factors sustaining engagement, how coproduction influenced research analysis, findings and dissemination of outputs, and what involvement meant for different stakeholders.ConclusionEngaged research supported the coproduction of knowledge in mental health research with low‐income communities which led to multiple impacts.
Highlights
Involving patients, service users, carers and members of the public in research has been part of health policy and practice in the UK for the last 15 years
An engaged research approach influenced the process and delivery of the DeStress project, creating a space where community partners felt empowered to coproduce knowledge relating to poverty-related mental distress, treatment and the training of health professionals that would otherwise have been missed
We examine motivations for involvement, factors sustaining engagement, how coproduction influenced research analysis, findings and dissemination of outputs, and what involvement meant for different stakeholders
Summary
Service users, carers and members of the public in research has been part of health policy and practice in the UK for the last 15 years. A growing body of literature within the field of mental health focuses on survivor and service-user-led research and the related field of ‘mad studies’,7,8 including the role of service-user researchers who bring both academic training and lived experience of mental health services Within this literature, a number of approaches to patient engagement exist, reflecting diverse disciplinary origins, as well as commonalities in their underpinning philosophies and potential for learning.[9] Coproduction of knowledge through engaged research has clear parallels with participatory action research and community-based participatory research, in the ways that trust, collaboration, and shared decision making and ownership are sought.[10,11]. Such approaches recognize the potential for evidence and knowledge to take a range of transdisciplinary and, non-hierarchical forms, have increased reflexivity and be coproduced outside of the tight and often limited bounds of academia.[10,14]
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