In order to provide context for the development of a lived experience framework for the family violence sector, a literature review was undertaken to explore best practice in co-production and participatory decision-making models with service users around sensitive issues. Some of the key findings of this review are summarised below.
Types of co-production
The review found that there is little consistency in the way in which co-production, co-design and consultation are defined (1). For the purposes of the review of the literature undertaken, co-production was defined as mechanisms which allow services and those with lived experience to come together to design policies and services that achieve better outcomes.
The literature suggests that the involvement of people with lived experience can occur across a continuum ranging from relatively low levels of engagement, to work that is consumer-led (2). Co- production differs from consultation because it ‘changes people from being “voices” to being agents in the design and delivery of public services’ (3). There is a considerable body of literature about participatory engagement and a number of ways of depicting and defining each level of the continuum. The diagram below is a simplified summary.
Importance of co-production
The underlying justification for the use of co-production is that the needs of service users are better met when people with lived experience are involved in designing and evaluating policies and services (3). The literature suggests that existing services supporting vulnerable groups have a tendency to disempower those people who are supposed to benefit from services, which may actually entrench and perpetuate a culture of dependency (3). Research has also found that the experience of being involved in a co- production activity as someone from a marginalised group can also have significant positive impacts for the individual (4).
Sectors using co-production
The review found that co-production has been occurring in some areas such as primary healthcare, mental health and Aboriginal service planning for some time. In contrast, other areas of social support have only recently begun to engage consumers in the design and evaluation of research, services and policy (5).
When looking at the evidence base supporting co-production, the vast majority of work has originated in the United Kingdom (UK) health system where service user involvement and collaborations have become embedded into policy development since the 1990s. While the health context is useful in providing guidance, it is also a very different area from family violence where the issues being tackled are often more sensitive and complex (6). The Australian mental health sector and Aboriginal service planning areas have seen concerted efforts to increase engagement of people with lived experience in service planning and evaluation where there are sensitivities.
Since the 1990s the mental health system has been engaging people with experience of using mental health services in a range of ways. There are many examples of co-production in mental healthcare and a growing body of knowledge which explores methods and challenges (7). The focus on engagement of people with lived experience in the mental health system is associated with the concept of recovery, with practitioners moving from focusing on the treatment of the disease and client clinical recovery to the promotion of wellbeing and personal recovery, with consumer engagement seen as one way of furthering this goal (8). One significant way in which people with lived experience are engaged in the mental health service system is as paid peer support workers, with over 300 of these roles currently funded across Victoria.
The literature suggests that some of the biggest challenges that faced the introduction of lived experience work in the mental health sector have been (9):
- professional defensiveness
- attitudes of mental health practitioners
- scepticism regarding the value of lived experience workers
- challenges in gathering formal evidence of efficacy to secure ongoing funding
For some years Australian state and federal governments have recognised that policy and service planning for Aboriginal people is complex due to factors such as colonisation, politics, geography and socio-economic marginalisation (10). In response they have recognised that more effective outcomes can be achieved if the Aboriginal community is involved in problem solving and self-determination (11). While efforts to engage the Aboriginal community have occurred, the literature suggests that early efforts were tokenistic consultations which have little impact on service design or responses (12).
More recently it has been acknowledged that consultation alone is not adequate and we can see examples of co-production where Aboriginal people are engaged in designing services, such as the Victorian Aboriginal Maternal Child Health Initiative (13) and antenatal services (14).
When looking at the literature about effective co-production across a range of settings including the mental health sector, some key principles emerge and are summarised below:
The literature suggests that any co-production activity needs to be supported by organisational leaders who promote the view that people with lived experience have a range of valuable skills and knowledge (15). A lack of organisational commitment has been described as a key challenge or barrier to effective engagement (9).
It is well-documented that a key driver for why people with lived experience decide to engage in a co- production activity is a desire to make a difference(2). It is therefore important that participants are given information about the scope, constraints and degree of influence their views are likely to have and also how their feedback has led to change.
Regardless of the sector in which the co-production is occurring, the foundations for successful collaboration appear to be built upon strong and genuine relationships (7). The literature emphasises these relationships can take some time to build and that structures to facilitate co-production need to have adequate timelines and longevity to be most effective (16). Another key factor underpinning successful co-production is the ability to reduce traditional boundaries between ‘professionals’ and ‘service users’ (15). This allows for power differentials to be reduced and a more equal exchange of knowledge (7).
Compensation for participation
There is a considerable body of literature about whether people with lived experience should be paid financial compensation for their involvement in co-production activities and there are multiple views. Several studies have found that financial compensation is not a motivating factor for involvement for those with lived experience, but rather something that was appreciated as symbolic of being valued and recognised (17). The literature suggests that offering recompense to participants for their time, input and costs incurred can be effective in contributing to reducing power imbalances.
The provision of support for people with lived experience is described as particularly important when the issues being discussed and addressed are of a sensitive nature or emotionally distressing. The literature suggests that debriefing for both those with lived experience and those working with these groups is important to ensure the maintenance of boundaries, promote self-care, prevent burnout and ensure the experience is a positive one.
Co-production in the family violence sector
In Australia as in the United Kingdom and the United States, the specialist family violence service system was built upon the foundations established by the refuge movement in the 1970s, where activists disseminated new knowledge about family violence based on their experience learning from women residents (18). At this time, the issue of family violence was not a named social issue or a crime and these early activists worked alongside those who had experienced family violence to develop organisations built with collective structures. Women with personal experience of family violence played a key role in establishing services which had a focus on self-help and collective activity (19). In addition, a significant number of professionals in this sector also have lived experience of violence (whether they chose to disclose this or not) (19).
Internationally it has been noted that due to the success of activists, organisations and peak bodies bringing attention to the issue of family violence, the number of people seeking help and breadth of services offering support to survivors of family violence grew considerably and funding was stretched (19). In Victoria over the past decade, both demand and funding levels have increased resulting in a range of changes to the way in which family violence specialist services are structured and operate (20). Likewise, in the United Kingdom research has found that the demand from funders for family violence services to professionalise has conflicted with the sector’s commitment to organisational collective approach to participation (19).
When exploring the degree to which victim survivor advocates can influence service delivery , research in the United Kingdom has found that there are ‘two contrasting situations at play’ (19). The first describes statutory agencies who engage in tokenistic or superficial consultation with users of services. The second situation is driven by the activist movement (19) who have consistently opposed the positioning of service users as ‘passive and powerless’ and have used a range of approaches to document and project victim survivor voices (21). However, research suggests that the resources to do this work have been dicult to secure and sustain (22). The international literature has commented that with the increase in funding, greater eciencies and professionalisation of the response to family violence has also come with a trend for survivor advocates to be less likely to be involved in management committees, decision-making or employed as workers than in the past (19). Despite this, the literature suggests that the specialist family violence sector is more focused on service user engagement than many other sectors.
Some examples of co-production initiatives in the area of family violence both nationally and internationally include lived experience advisory groups and committees, media training and advocacy programs, and peer workers. As part of the development of this framework, work was undertaken to map family violence co-production activities across Victoria. The initiatives which were identified and where available documentation was accessible are outlined in the Models section of the framework.
- Women’s Health East- Eastern Media Advocacy ‘Voices for Change’
- Victorian Government- Victim Survivor’s Advisory Council (VSAC)
- Drummond St — iHeal Family Recovery Support Service Peer Work Model
- Safe Steps — Survivor Advocate Program
- University of Melbourne- WEAVERS lived experience group
- In Touch Multicultural Centre Against Violence- Inspire for Change: Multicultural Voices of Lived Experience
It should be noted that a significant number of these initiatives are currently inactive due to discontinuation of funding. A key challenge described by the organisations was securing long term and/ or ongoing funding.