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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)

Consumersā€™ 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 ā€“ 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 ā€“ 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) ā€“ 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 ā€“ 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 ā€“ 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 ā€“ Why is it important, and how is it integrated into service delivery?

Services

29.5 (76)

39 (60)

42 (62)

Reach ā€“ 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 ā€“ What works and what doesnā€™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 ā€“ 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 ā€“ 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 ā€“ less technology familiarity; younger people ā€“ social media, smart phones)

Language and Communication

44.5 (69)

84 (30)

19 (75)

Care planning ā€“ 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 ā€“ 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 ā€“ 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 ā€“ 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 ā€“ Why is there a disconnect?

Treatment

66 (60)

52.5 (55)

38.5 (63)

Carers and bereavement ā€“ 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 ā€“ 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 ā€˜privacyā€™ 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 ā€“ What information is given, does it follow best practice, what are consumersā€™ 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 ā€˜importantā€™) to 87 (least frequently rated as ā€˜importantā€™)). 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,Ā NDIS National Disability Insurance Scheme