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Table 2 Research priority ratings for consumers, carers and consumer/carers

From: Mental health research priorities in Australia: a consumer and carer agenda

Research topic Topic area Priority ranking (percentage important ratings)
Consumer Carer Consumer/Carer
How to implement internationally recognised models of peer support in Australia Peer to Peer 1 (94) 24 (70) 72.5 (44)
Over-representation of mental illness in the justice system Justice 2 (88) 1.5 (100) 11 (78)
How is psychosocial disability defined in the NDIS, and how will it impact consumers and carers in Australia? National Disability Insurance Scheme 4.5 (88) 9 (80) 15.5 (76)
How does the use of language include/exclude individuals? Language and Communication 4.5 (88) 69 (44) 55.5 (56)
Consumers’ experiences of peer-to-peer services Peer to Peer 4.5 (88) 39 (60) 64.5 (50)
Social inclusion Other 4.5 (88) 15.5 (78) 44.5 (60)
How participation works in practice (tokenism vs. real involvement) Consumer and Carer Involvement 7.5 (85) 24 (70) 11 (78)
What is helpful in recovery-oriented services? Experiences of Care 7.5 (85) 9 (80) 32 (65)
Peer-led services – What are the gaps? (e.g. support groups) Peer to Peer 10 (84) 46.5 (56) 55.5 (56)
How to recruit and train peer workers – What is going on, and where? Where is it embedded? How are they being supported? Peer to Peer 10 (84) 39 (60) 55.5 (56)
Mental health in LGBTIQ+ populations Other 10 (84) 46.5 (56) 38.5 (63)
How is the consumer and carer voice integrated into policy and services? How are their contributions valued, and what indicators exist to demonstrate how their voice is used? Services 12 (84) 52.5 (55) 21.5 (71)
How do we expand who is involved? (e.g. young people) Consumer and Carer Involvement 13 (82) 15.5 (78) 64.5 (50)
Is medication what we want? Side effects, health impacts, alternatives, efficacy, cost-effectiveness Medication 14 (79) 34 (64) 59 (55)
Stigma by health providers (mental health and others) – What do they believe and how does it impact? Stigma 15.5 (79) 24 (70) 5 (83)
Are consumers being consulted about their experiences of care? Experiences of Care 15.5 (79) 24 (70) 21.5 (71)
Impact of service delivery on consumers and carers – What contributes to recovery? Services 17 (78) 58 (50) 7 (81)
What programmes/supports can be devised for reaching individuals that are outside of NDIS scope? National Disability Insurance Scheme 20.5 (78) 9 (80) 15.5 (76)
Peer support in public mental health system Peer to Peer 20.5 (78) 46.5 (56) 24.5 (69)
Accommodation Other 20.5 (78) 46.5 (56) 25.5 (69)
Employment Other 20.5 (78) 5 (89) 7 (81)
Support in education settings Other 20.5 (78) 15.5 (78) 77 (38)
Culturally and linguistically diverse perspectives within mainstream mental health system Other 20.5 (78) 69 (44) 32 (65)
How do individuals adapt to changes in medication that impact lifestyle and quality of life? Medication 24 (77) 52.5 (55) 38.5 (63)
Training of psychologists – How can consumer perspectives be incorporated? Health Professionals 26.5 (76) 62.5 (45) 44 .5 (60)
Where do physical health concerns fit into health services when you have mental health problems as a main focus? Comorbidity and Physical Health 26.5 (76) 39 (60) 11 (78)
Discrimination Justice 26.5 (76) 15.5 (78) 27.5 (67)
How have people who have experienced trauma been cared for? Experiences of Care 26.5 (76) 39 (60) 21.5 (71)
Trauma informed care – Why is it important, and how is it integrated into service delivery? Services 29.5 (76) 39 (60) 42 (62)
Reach – Are services reaching the people that need them? Services 29.5 (76) 3 (91) 27.5 (67)
Capacity for decision-making/change in legislation and its application; consumer and carer experiences of this. What information is provided about legislation? What support is provided, e.g. legal? Legislation 32.5 (75) 15.5 (78) 47.5 (59)
To what extent do we follow human rights legislation on mental illness? Legislation 32.5 (75) 24 (70) 15.5 (76)
Recovery and fulfilling potential Other 32.5 (75) 15.5 (78) 64.5 (50)
Suicide: continuous care and support Other 32.5 (75) 5 (89) 7 (81)
Is care traumatising? Experiences of Care 35 (74) 9 (80) 15.5 (76)
Consumer and carer journey through service pathways – What works and what doesn’t? What do clinicians think? Services 36.5 (73) 34 (64) 52 (57)
Care coordination between mental health and physical health Comorbidity and Physical Health 36.5 (73) 58 (50) 1 (89)
Consumer perspectives on use of labels – Which terms are useful/helpful, which are not? Language and Communication 38.5 (72) 69 (44) 47.5 (59)
Mental health in culturally and linguistically diverse populations Other 38.5 (72) 58 (50) 32 (65)
Children of people with mental illness Other 40 (71) 29.5 (67) 38.5 (63)
Awareness and role of GPs, e.g. engagement with carers, language and communication skills with consumers and carers Services 41.5 (70) 62.5 (46) 15.5 (76)
Exhaustion and burnout of mental health professionals – Impact on service support and delivery Health Professionals 41.5 (70) 34 (64) 32 (65)
How many people with mental illness/disability are eligible for NDIS support? National Disability Insurance Scheme 44.5 (69) 46.5 (56) 60 (53)
What forms of communication work for consumers and carers? (e.g. older people – less technology familiarity; younger people – social media, smart phones) Language and Communication 44.5 (69) 84 (30) 19 (75)
Care planning – What makes a good mental health plan? (e.g. individualised, including perspectives of consumers, carers and clinicians) Treatment 44.5 (69) 34 (64) 3.5 (84)
Transparency of clinical management – How does it respond and interact with consumers and carers? Treatment 44.5 (69) 58 (50) 3.5 (84)
What are the experiences of and needs of people coming off medication? How are they being supported? Medication 47 (68) 62.5 (45) 9 (80)
How mental health-aware are GPs? Health Professionals 49.5 (67) 34 (64) 38.5 (63)
What is the role of a GP (perceived and actual) as part of the therapeutic alliance in care of mental health consumers? Health Professionals 49.5 (67) 52.5 (55) 26 (68)
Stigma around borderline personality disorder Stigma 49.5 (67) 81 (33) 76 (39)
Stigma as a barrier to consumer involvement Stigma 49.5 (67) 46.5 (56) 43 (61)
Alternative treatments – What are they, and how can they contribute to recovery? Holistic approaches, meditation, exercise Treatment 52.5 (66) 76.5 (36) 75 (40)
Learned helplessness (experience with services) Other 52.5 (66) 69 (44) 55.5 (56)
Consumers and carers – Who is involved? Consumer and Carer Involvement 55 (64) 15.5 (78) 55.5 (56)
Does the stigma in the mental health system worsen outcomes? Stigma 55 (64) 29.5 (67) 32 (65)
What is the effect of caring? Carers, Family and Friends 55 (64) 5 (89) 15.5 (76)
What sources of information do consumers and carers have faith in? Language and Communication 57 (63) 81 (33) 64.5 (50)
How can medications be tailored to the individual? Medication 58.5 (62) 62.5 (45) 50.5 (58)
Criteria for prescribing medications Medication 58.5 (62) 52.5 (55) 38.5 (63)
What are clinician views on peer support? Peer to Peer 60.5 (61) 81 (33) 72.5 (44)
Risk factors for mental illness Other 60.5 (61) 46.5 (56) 32 (65)
How can we get mental health and other health professionals to work together more efficiently? Health Professionals 63.5 (61) 20 (73) 50.5 (58)
Comorbidities and stigma Stigma 63.5 (61) 69 (44) 64.5 (50)
What changes do people make in their own lives as a result of stigma? Stigma 63.5 (61) 46.5 (56) 55.5 (56)
Who are the carers and what are they doing? Carers, Family and Friends 63.5 (61) 24 (70) 47.5 (59)
Translation of clinical frameworks and guidelines into practice – Why is there a disconnect? Treatment 66 (60) 52.5 (55) 38.5 (63)
Carers and bereavement – Are we offering enough counselling? Is it timely enough? Should it be offered in prisons? Carers, Family and Friends 67.5 (59) 9 (80) 32 (65)
What is a peer? Peer to Peer 67.5 (59) 81 (33) 86 (19)
What support is available when pain is a comorbid condition? How are people experiencing that? Comorbidity and Physical Health 70.5 (58) 85 (22) 64.5 (50)
What is the evidence base linking mental illness with alcohol and other drugs? Comorbidity and Physical Health 70.5 (58) 29.5 (67) 64.5 (50)
What kind of support would carers like? Carers, Family and Friends 70.5 (58) 1.5 (100) 21.5 (71)
Is there such a thing as carer recovery? Carers, Family and Friends 70.5 (58) 15.5 (78) 2 (88)
How do current protocols support consumer and carer journeys to recovery? Treatment 73.5 (57) 24 (70) 69 (47)
How are Partners in Recovery, Personal Helpers and Mentors, support and clinical management working together? Services 73.5 (57) 76.5 (36) 74 (43)
Bullying Other 75 (56) 81 (33) 72.5 (44)
Trial of primary healthcare nurse within mental health teams – Does it improve physical health outcomes? Comorbidity and Physical Health 76.5 (55) 74 (40) 84 (28)
Analysis of stigma according to disorder Stigma 76.5 (55) 69 (44) 47.5 (59)
Bereavement Other 78 (53) 69 (44) 82 (31)
How is ‘privacy’ interpreted by health professionals, and does it differ from consumer and carer interpretations? Health Professionals 79.5 (52) 52.5 (55) 81 (32)
Stereotype formation Stigma 79.5 (52) 58 (50) 79.5 (33)
Insurance Other 81 (50) 29.5 (67) 85 (25)
Gender-specific effects of medication Medication 82 (47) 87 (18) 78 (35)
Effects of drug and alcohol use early in life Comorbidity and Physical Health 83 (39) 69 (44) 72.5 (44)
Electroconvulsive therapy – What information is given, does it follow best practice, what are consumers’ experiences? Treatment 84.5 (31) 86 (20) 83 (30)
Smoking cessation Other 85.5 (31) 69 (44) 87 (7)
Do the public and private sectors work together? Consumer and carer experiences Services 86 (30) 76.5 (36) 79.5 (33)
Pet therapy Treatment 87 (26) 76.5 (36) 64.5 (50)
  1. Note: Items are ranked in descending order of consumer importance rating percentages (from 1 (most frequently rated as ‘important’) to 87 (least frequently rated as ‘important’)). The percentage rankings for the carer and consumer/carer participant groups are provided for comparison. Items sharing the same importance rating percentage were assigned a mean rank [19]
  2. GP General Practitioners, LGBTIQ+ Lesbian, Gay, Bisexual, Transgender, Intersex or Queer, NDIS National Disability Insurance Scheme