Working with consumers & carers to identify research priorities in psychosis
Article by By Susan Golley
Established to be the umbrella organisation and knowledge bank for research related to psychosis in Australia, the immediate goals of Psychosis Australia are to:
- Reduce the burden of disease on individuals, families and the community by promoting and facilitating the translation of research
- Link the priorities of researchers to those of Australians who have the lived experience of psychosis
- Develop an evidence-based approach to allocating priorities for further research; building wherever possible on existing strengths where Australia can be a leader;
At all times Psychosis Australia holds the people directly affected by these disorders at the heart of the enterprise. Discussions about a common national mental health research agenda in Australia have been an important topic for key mental health scientists and as part of this discussion the Psychosis Australia Trust completed a study to investigate research priorities in psychosis from the perspective of people directly affected by mental illness.
A Delphi study approach was used to gain consensus on research topics identified as most important to people who are affected by mental illness.
Participants were predominantly female (84%), living in NSW or SA and their average age was in their 40s. Over half (54%) of participants had completed a university degree or higher. There was equal representation in participants whom identified as being a person affected by psychosis (54%) as well as being a caregiver (50%).
The results from 90 participants in survey one were analysed to identify nine categories of topics deemed important and meaningful to participants’
- Perception of mental illness in society
- Mental health service delivery
- Clinical mental health staff
- Family, carers and relationships
- Personal recovery
- Community participation and society
- Health and well-being
Participants completed the second stage survey to rate the relevance/importance of the 67 research topics in the nine categories identified in Stage 1. 33 research topics received scores of 2.5 or over out of a possible 3 and hence, were considered ‘very important’ by over at least 80% (83.3%) of participants.
The third and final stage survey asked participants to prioritise all research topics from 1 to 33 in order to indicate which research topics were most important to them. 39 participants completed this stage to identify those topics of greatest priority:
Results from this pilot study identify key findings regarding the focus of the mental health research agenda from the viewpoint of people with lived experience of psychosis and their significant others:
- Recovery - Understanding the process of recovery from the perspective of individuals
- Equitable and adequate services - Equitable and adequate access to mental health specific programs and services
- Continuity of care - Continuity of care between hospital to community and after
- Mental health staff:
- Effectiveness of mental health staff in communicating with people with psychosis
- Mental health staff’s attitudes in supporting the recovery of people with psychosis
- Preventative care planning - Mental health system moving from crisis-focused intervention to preventative care planning
- Best practice in treatment and service delivery
- Understanding relapse, early warning signs and relapse prevention planning
- Best practice for the care of people with mental illness in the community
- Best practice of recovery-oriented service delivery
- Developing better treatments, working towards a cure
These findings have been considered alongside the key topics identified by leading researchers in psychosis. Not surprisingly perhaps, the priorities were very different! However, the views of consumers and carers summarised here have proven to be very influential in working towards a shared agenda for ongoing research priorities. Psychosis Australia will continue to ensure that the consumer and carer voice plays a major role in shaping its activities.
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Article contributed to the newsletter Perspectives - June 2014. Please note that this article is from an individual contributor and does not necessarily reflect the views of the Mental Health Council of Australia