Consumer participation/engagement has been fundamental to best practice in the mental health field for decades. Positive outcomes based on engagement, for those living with mental health issues, include self management and partnership in health management, retention in treatment/treatment adherence, capacity building, increase in confidence, and a sector which recognises the value of lived experience.
Learning from the experiences of mental health, consumer participation within the AOD treatment sector is increasingly being recognised as fundamental to necessary improvements in client retention, client service satisfaction and self-directed healthcare. In addition, improvements in policy, service delivery and practice, treatment uptake and staff/consumer relations can all be related back to improvements in consumer engagement.
What then is this nebulous concept with so great potential to improve staff and consumers’ experiences of AOD treatment services?
How does a theory transcend to practice and have the potential to improve communication, increase trust and the capacity of consumers to engage in service delivery, policy, procedure as well as improved social and health outcomes?
Organisational buy-in is essential
Consumer engagement is not only a practice, it also includes elements of the individual, environmental, structural and the social. When these elements come together, beneficial change can occur. Changes can only really come about and be sustained when services’ governance and management, staff and consumers ‘buy in’. There exists a degree of misapprehension and confusion in relation to consumer engagement/participation. This includes concerns that individuals will lose power or employment, a fear of loss of control, concerns in regard to cost (financial and work time), that consumers aren’t interested or capable of participation, and that it is ineffective. At the very base of issues impacting on positive consumer engagement, however, are that of stigma, discrimination, language and stereotypes—an inability to appreciate the value of lived experience: that consumers are the expert in their own lives.
Therefore, the elements at each level within the organisation which need to coalesce for consumer engagement to be effective include:
Service governance/management level direction, guidance and leadership; overt support of consumer engagement initiatives; obvious involvement; ensuring consumer engagement is core to policy; resourcing; and the provision of training (including attendance) for all staff and consumers.
Staff level attendance at relevant training; assessment and acknowledgement of individual fears or concerns; support and participation in consumer engagement initiatives; supporting and enacting relevant policy and procedures; valuing lived experience; working professionally and communicating consistently; and being open to change.
Consumer/client level attendance at relevant training; being open to change; not engaging in stigmatising attitudes (including self-stigma); participating in initiatives; valuing own and others’ lived experience; and thinking ‘outside the square’.
In a practical sense, consumer participation activities in AOD treatment services can fall into a series of types and levels of engagement.
To inform consumers of an issue—low level of engagement:
Information flyers, posters and other resources
To consult with consumer and obtain feedback—low/medium level of engagement:
To involve consumers in addressing concerns and aspirations—medium level of engagement:
To collaborate in partnership with consumers on the development of options and decision making—high level of engagement:
Expert advisory groups
To empower consumers with final decision-making opportunities—very high level of engagement:
Board of directors
Speeches and presentations
Identified and supported consumer positions
Consumer/peer driven research
Genuine participation is key
Perhaps one of the greatest challenges or barriers to successful change brought about through consumer participation is that of prior experiences and negative expectations. Consumers have often had negative experiences of not being ‘heard’, their lived experience not being valued, of not receiving feedback, not having complaints addressed, of tokenistic or nil involvement in project and program development (including their own AOD treatment), and of having suggestions and ideas dismissed without explanation. This can lead to disillusionment and suspicion when consumers are invited to participate in these initiatives: the belief that nothing will change regardless, or that their involvement will be undervalued. This is compounded by the reality that consumer participation projects and positive organisational change take time and require patience: baby steps, extensive planning and seeking of support from often time-poor staff and stakeholders.
Therefore, it becomes obvious that it takes a number of components, planning, training and support for consumer participation projects to come to fruition. Consumer initiatives do bring about sustainable change, capacity building, improved health and social outcomes—it’s worth the effort when you see the positives for staff and consumers alike.