Psychosis Australia Trust Consumer & Carer Research Priorities Study – Final Report

Introduction

The focus to integrate research efforts towards a common national mental health research agenda in Australia is gaining momentum with early developments involving mental health scientists discussing their priorities for research. As part of this action, Psychosis Australia Trust (PAT) is undertaking an extensive process of clarifying the research agenda specifically relating to psychosis and in doing so, by including as much meaningful input from service users (people with lived experience) as possible. This report aims to inform this agenda by providing a preliminary snapshot of the research priorities relating to psychosis as identified by people affected by mental illness to stand alongside discussions with mental health research scientists.

Psychosis Australia Trust undertook a pilot study utilising a Delphi study approach to investigate research priorities on psychosis from the perspective of people affected by mental illness. Three rounds of online surveys were completed that included an initial group of 81 participants from around Australia identifying as people with lived experience of mental illness, family members and/or carers of someone with a lived experience of mental illness. These rounds of surveys involved i. identifying, ii. valuing, and iii. prioritising topics of research that participants reported as pertinent to their lived experiences in daily life of being affected by mental illness.

Participants identified six primary focus areas which require further examination and exploration in research and inquiry. Participants reported that understanding the processes that support or hinder recovery are of utmost importance to them. This was followed by investigation into equitable and adequate mental health services, continuity of care between hospital to community and after, effectiveness of mental health staff in their approach and communication with people who experience psychosis, preventative care planning, and best practice with treatment and service delivery.

 

Background

There has been a considerable amount of interest in the role of health system users in the development of health related research (Robotin, 2010). As the consumer movement in the mental illness sector has developed, people with lived experience of mental illness have shown a great deal of interest in becoming involved. Kathy Griffiths, Director and Senior Fellow of the Depression and Anxiety Consumer Research Unit at the Centre for Mental Health Research, Australian National University reported that when her research team undertook “a quantitative survey of the opinions of mental health consumers about research priorities for mental health in Australia, they rated ‘involvement of mental health consumers in planning the research’ as of very high priority, as did carers” (Griffiths, Jorm, Christensen, Medway & Dear, 2004).

Consumer participation as equal stakeholders at all stages of research efforts is gaining recognition efforts with a growing number of studies involving consumer researchers and advisors (Hancock, Bundy, Tamsett & McMahon, 2012). In light of this, The Centre for Mental Health Research conducted The Research Priorities in Mental Health study, which explored various stakeholders’ perspectives on the mental health agenda including consumers, family members, carers, clinicians, researchers, policy makers, research funders and various mental health advocacy groups (Jorm, Griffiths, Christensen & Medway, 2002). The largest of its kind to date, this study identified the key factors considered to be most important in terms of the mental health research agenda to be suffering to the individual affected by mental illness, the potential for research to positively impact people’s lives, and the long-term effects of mental illness on a person’s life. Another key finding of this study was how integral input of people affected by mental illness is in planning and developing research. Further, this national study has highlighted the need “for more dialogue on how decisions are made about research funding”.

Alzheimer’s Australia (2010) has cited numerous reasons as to the added meaning and value that the perspectives of consumers and carers bring to research development. These include increased credibility and relevance of outcomes to people affected by mental illness, innovations in treatment and practice approaches, and broader and holistic perspective on areas for research than traditionally identified.

To date, missing from the mental health research dialogue is the perspective of people who are specifically affected by psychosis and the unique experiences and needs that this illness brings.

 

Methodology

A Delphi study approach was utilised to gain consensus on research topics identified as most important to people who are affected by mental illness. This type of study uses three rounds of online surveys to identify, refine and prioritise research topics that participants identify as most critical.

Participant Demographics

Participants were predominantly female (84%), living in New South Wales or South Australia 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%). 44% of participants identified as being a spouse or family member of a person affected by psychosis.

Survey 1

81 participants recruited from within Australia completed the first survey stage of the study. This allowed participant to voice their perspectives on what they thought were issues that needed to inform the mental health research agenda from their experiences with psychosis or knowing someone with psychosis. Participants were also presented with a list of research priorities as defined by research scientists to prioritise in terms of level of relevance.

The results from survey 1 were analysed to identify 9 categories of topics deemed as important and meaningful to participants’ experiences:

  1. Perception of mental illness in society
  2. Mental health service delivery
  3. Clinical mental health staff
  4. Family, carers and relationships
  5. Personal recovery
  6. Medication
  7. Community participation and society
  8. Health and well-being
  9. Psychosis

67 topics were identified in total by participants that fit into each of these categories.

Survey 2

58 participants completed the second stage survey of the Delphi study which required participants to rate the relevance/importance of the 67 research topics 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.

Survey 3

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:

  1. Understanding the process of recovery from the perspective of individuals
  2. Equitable and adequate access to mental health specific programs and services
  3. Continuity of care between hospital to community and after
  4. Effectiveness of mental health staff in communicating with people with psychosis
  5. Mental health system moving from crisis-focused intervention to preventative care planning
  6. Understanding relapse, early warning signs and relapse prevention planning
  7. Best practice for the care of people with mental illness in the community
  8. Best practice of recovery-oriented service delivery
  9. Developing better treatments, working towards a cure
  10. Mental health staff’s attitudes in supporting the recovery of people with psychosis
  11. How family can support a person who does not believe they have a mental illness
  12. Side effects of medication on physical health
  13. Additional training needs required for mental health staff to apply a recovery-oriented approach
  14. Prevention of psychotic episodes
  15. Awareness and effectiveness of psychosocial rehabilitation services/programs
  16. Side effects of medication on mental illness
  17. Responsiveness of the clinical mental health system to support people during acute episodes
  18. Role of support networks in the recovery of people with mental illness
  19. Effectiveness of medication in affecting symptoms
  20. Best practice approaches to providing social participation support for people with psychosis
  21. Impact of underlying experiences e.g. trauma, for a person with psychosis
  22. How people with high hospital admission rates enter the recovery pathway
  23. Roles for people with lived experience of psychosis to play in research development and execution
  24. Identification of effective strategies in maintaining optimal physical health for people with psychosis
  25. How to reduce stigma within the community
  26. Best practice approaches to providing supported accommodation for people with psychosis
  27. Suicide prevention
  28. Best practice for family and carer support
  29. The impact on families and carers where a family member experiences psychosis
  30. Development of new medications
  31. Adequacy of support for people with psychosis for obtaining and maintaining successful employment
  32. Mental illness stigma – Its impact and what constitutes it
  33. The impact on children living with a parent with psychosis

The highest 10 prioritised topics were analysed and defined.

 

Key findings

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:

  1. Recovery – Understanding the process of recovery from the perspective of individuals
  2. Equitable and adequate services – Equitable and adequate access to mental health specific programs and services
  3. Continuity of care – Continuity of care between hospital to community and after
  4. 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
  5. Preventative care planning – Mental health system moving from crisis-focused intervention to preventative care planning
  6. 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

 

References

Alzheimer’s Australia (2010). Dementia research: Alzheimer’s Australia’s Consumer Dementia Research Network: A report for Alzheimer’s Australia. Sydney: Author.

Griffiths, K.M., Jorm, A.F., Christensen, H., Medway, J., & Dear, K.B. (2002). Research priorities in mental health, Part 2: An evaluation of the current research effort against stakeholders’ priorities. Australian and New Zealand Journal of Psychiatry, 36(3), 327-339.

Hancock, N., Bundy, A., Tamsett, S., & McMahon, M. (2012). Participation of mental health consumers in research: Training addressed and reliability assessed. Australian Occupational Therapy Journal, 59(3), 218-224.

Jorm, A., Griffiths, K., Christensen, H. & Medway, J. (2002). Research priorities in mental health. Canberra: Commonwealth of Australia.

Robotin, M.C., Jones, S.C., Biankin, A.V., Waters, L., Iverson, D., Gooden, H., Barraclough, B., & Penman, A.G. (2010). Defining research priorities for pancreatic cancer in Australia: Results of a consensus development process. Cancer Causes Control, 21, 729-736.

 

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