An equality of condition framework for user involvement in mental health policy and planning: evidence from participatory action research

Abstract

Discussions about user involvement in the mental health services tend to throw up four major areas of concern: the capacity of service users to participate, their lack of participation skills, the need for a positive organisational culture and the need for arenas of participation. This article presents evidence from participatory action research with Irish mental health service users which explored how they could more equally participate in advisory committees. Participants identified barriers to their equal participation due to unequal cultural, physical, mental and economic resources, time, power, ‘stigma’(prejudice) and lack of respect for their experiential knowledge and emotional expression. These barriers fall within the ‘equality of condition framework’ developed by Baker and colleagues. Enabling equal user involvement in strategic decision‐making requires more than arenas of participation – it requires comprehensively addressing service users’ structural disadvantages throughout the process of involvement.

Keywords:

• user involvement
• consumer participation
• empowerment

Notes

1. The terms used to describe participants in the mental health system are highly contested. This article will use the term service user as shorthand to refer to the social group defined by having been diagnosed with a mental illness and/or having had long‐term engagement with mental health services. With this definition I seek to focus on the social status of a person diagnosed with mental illness while bracketing off the ontology of ‘mental illness’.

2. The aspect of ‘love’ referred to here is the emotional labour involved in ‘listening, affirming, supporting and challenging, as well as identifying with someone and supporting her or him emotionally at times of distress’ (Lynch 2007, 560). The term is not intended to sentimentalise the voices of service users nor to devalue their views, but rather to recognise the value of both emotional support and the expression of emotions in the public domain.