— Tools, Guidelines & Frameworks
What should be done and how it can be done.
Abstract
Perspectives of healthcare have, in past decades, focused more on active citizenship, human rights and empowerment. Healthcare consumer involvement as a concept is still unstructured and consumers have no apparent opportunities to participate in their care processes. The focus is often on the expertise of professionals, even if mental health consumers are willing to become involved and have sufficient decisional capacity. The aim of this integrative literature review was to construct an understanding of consumer perceptions and guiding frameworks of consumer involvement. There was no previous synthesis of mental health consumer perceptions combined with guiding frameworks. An integrative review methodology was employed, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the 18 studies included was analysed with the Whittemore and Knafl approach. By following Braun and Clarke's guidelines, an inductive thematic analysis was conducted to collate the themes from the selected papers. Mental health consumers' perceptions of involvement included expectations of person-centred care, such as respect, dignity, equal interaction, supportive environments and being part of a community. This research did not find any single established framework to give clear guidelines for consumer involvement in mental healthcare, but similar determinants describing various frameworks were uncovered. This review also shows how the terminology has changed throughout the years. The perceptions of mental health consumers need to be considered to enable the implementation of person-centredness from guidelines through to practice. Paying more attention to the education of professional mental health caregivers and the involvement of mental health consumers in their care provides better opportunities to co-develop successful mental health services and recovery processes.
Summary
The framework guides policy makers to engage more meaningfully with people who have experienced mental illness and/or emotional issues, and those who care for them.
In Victoria, consumers who use Victoria’s mental health system are included in policy decision making, along with their families and carers.
By putting people with lived experience at the centre of designing and delivering mental health services, we are able to ensure that they meet the needs of the people who use them which will keep more Victorians healthy and well.
Summary
This Lived Experience Framework (Framework) is the response to the call for embedding lived experience across the sector and system processes, comprises a language guide, vision, guiding principles, actions and implementation approach to embed lived experience across mental health and social services systems.
In co-designing this Framework, participants endeavoured to live out this vision by bringing together people with lived experience of mental health issues and caring, families and kinship groups as well as stakeholders from within the mental health and social services systems. Together, their challenge was to listen, acknowledge their differences and find a common ground that extended respect to the needs and hopes of all. This document reflects their wisdom, compassion and commitment. This Framework provides a guide to encourage efforts to be brave, generous and curious in spirit, to seek out opportunities to learn and improve, and for people with lived experience of mental health issues and caring, families and kinship groups to work together with service providers as equal partners. This Framework is to be implemented by mental health and social services in NSW so that people with lived experience of mental health issues and caring, families and kinship groups participate in, influence and have leadership in mental health and social services in NSW.
Introduction
While there is no precise checklist or explicit ‘how to’ guideline on how to facilitate co-design initiatives, this practice framework will offer a template of ideas, opportunities and considerations to empower Mind employees to authentically engage communities in decision-making with confidence. This practice framework is an example of participation and co-design itself.
It is influenced by innovative and leading work from within Australia and internationally, however most of the content has been developed with direct input from Mind’s Lived Experience Advisory Team and practitioners across the organisation. Included in the framework is a position statement: Working together to make a difference) which was entirely led and designed by people who have been involved in co-design at Mind to share some key success criteria with practitioners.