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Global Mental Health > Service-user led research > Flashcards

Service-user led research Flashcards

1
Q

When did the emptying of the English psychiatric hospitals start?

A

In the late 1960s

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2
Q

What was the state of psychiatric patients of English hospitals in 1980s?

A

By 1984, many patients had been rehoused in the community

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3
Q

What happened with the Camden Mental Health Consortium?

A

> Massive policy change

> Peer-interviews gave patients the chance to speak
- for psychiatry is was pointless since people with psychosis often have incoherent speech

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4
Q

What were the findings of the Camden Mental Health Consortium?

A
  • Some aspects of the old asylum system were missed

- Parts of the new provision were disliked

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5
Q

What did the Department of Health (UK) do in 1996 regarding service users?

A

Consumers in NHS Research

  • first time in the world where service users were involved in research process
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6
Q

What were the aims of consumers in NHS research (1996)?

A
  1. Involve in the research process people who use the health service across all specialities
  2. Make research more relevant
    - if you involve users, you will discover what really matters
  3. Lead to greater patient benefit
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7
Q

How did patient-generated patient-reported outcome measures (PROM) emerge?

A

How to make a difference to research and practice?

  • mainstream methods are constraining
  • > Change methods + Develop new methods = PROMs
  • PROMs were limited -> patient-generated PROMs
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8
Q

What do patient-reported outcome measures (PROMs) consist of?

A

> Patients complete the measures themselves

-> not a clinician-judged outcome measure

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9
Q

What were the limits of the patient-reported outcome measures (PROMs)?

A

Questionnaires devised purely by clinicians and conventional researchers

  • > Patients get no say in what they’re asked
  • > What patients think is invisible
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10
Q

What do patient-generated PROMs consist of?

A

Those doing the research are also service users

-> participatory research

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11
Q

What is the patient-generated PROM model based on?

A

Participatory research

-> researchers have the same or similar experience as the participants

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12
Q

What is the aim of the patient-generated PROM model?

A

Reduce the power relations between research and participants

- which influences the results

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13
Q

What is new in participatory research?

A

Participatory research projects aim to shape the research by the community
BUT the researcher is external to the community (only one identity)

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14
Q

What is the VOICE research (2009) and did it find?

A

Views On In-Patient CarE: user-led research

  • main outcome measure in an RCT of psychological interventions in in-patient treatment
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15
Q

What were the findings of VOICE (2009)?

A

The grey literature and lots of anecdotal evidence show that people aren’t happy with in-patient care

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16
Q

What was the inclusion criteria in VOICE (2009)?

A
  • People who had been in-patients in the local provider trust in last 2 years
    = recent in-patient experience
  • One group of only involuntary patients (who had been detained)
  • All groups had some participants who had been detained
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17
Q

What are the steps to develop a user-generated outcome measure?

A
  1. Focus groups
    - each of 6-8 people (VOICE had 4 groups)
    - each group has a facilitator
  2. Provisional measure (questionnaire)
    - derived from existing questionnaires
    - quantitative and qualitative questions
  3. Feasibility study
    - refine the measure
  4. Psychometrics and statistical treatment
    - data driven through statistical programme
    - > rigorous research
18
Q

What is the nature of the process to develop a user-generated outcome measure?

A

It is a bottom-up process

  • rather than top-down (conventional way to make questionnaire)
19
Q

What is the iterative process of a feasibility study in the development of user-generated outcome measure?

A

> Pilot questionnaire given to 10 people
- see what problems come up

> Make necessary changes and give the new version to another 10 people
- see what problems come up

> Again, make necessary changes and give to another 10 people…
- until the last 10 people don’t have problems with the questionnaire

20
Q

What are the two opposing reactions to user-generated research instruments?

A
  1. I forgot you’re not a psychiatrist
  2. We’ve told you our experience. Now tell us about yours
    - > reciprocity
21
Q

What is the problem in user-generated research when the researcher shares his/her experience with the participants?

A

If researcher and participants, both service users, share their experiences, it might shape the discussions
-> contaminating the research

22
Q

What is the problem of gatekeepers in research lead in low-resource settings?

A

Often, communities in low-resource settings are hierarchical
- the first point of contact is the elders, usually men, who decide who the researcher talks to

  • > issues about gender, sexuality, class or caste
  • > defeats the purpose of community shaping the research
23
Q

Who were the gatekeepers in VOICE (2009)?

A

Community mental health professionals

24
Q

Who are the people / service users who might be excluded by gatekeepers in research?

A
  • Those who lack capacity
  • Too unwell
  • Chaotic
  • Ambivalent residence status

-> people who have different experiences and are more powerless than service users recruited

25
Q

What is the purpose of consulting the community for user-generated research instruments?

A

To have a representative pool of participants (demographics reflecting the catchment area)

  • you go in the community to see what people outside the research context think of the measures
26
Q

When and how were topic-specific networks abolished?

A

2014: National Institute for Health Research
- made research organisation regional

  • mental health networks disappeared
  • any study must show it has service-user and carer participation
27
Q

What are the challenges of the patient-researcher double identity?

A

> Most projects in KCL were collaborative, headed by psychiatry and psychology professors

> The idea you can be both a patient and a researcher is hard for some people

-> Whose and what knowledge counts?

28
Q

What is the problem of gold standards in the hierarchy of evidence regarding patients?

A
  • Gold standards (e.g. RCTs) are meant to be neutral, eliminating bias
  • However, outcome measures are devised by clinicians
  • > nay not be relevant to patients
29
Q

Where does user-generated research appear in the hierarchy of evidence?

A

> Patients have an expertise as service users

  • report experience of distress
  • report experience of what psychiatry has to offer
  • > different knowledge perspective

> YET, expert opinion is the weakest form of evidence

  • experts are psychiatrists and committees (the same that make DSM)
  • AND qualitative research is entirely absent
30
Q

Where do bias and neutrality stand in service user-led research?

A

> Bias is a frequent charge

  • accusations are implicit, occasionally explicit
  • “biased, anecdotal, over-involved”

> Service users make no pretence of neutrality
- their standpoint is epistemological and political

31
Q

What happened with the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2008?

A
  • Endorsed by over 150 countries
  • Gives equal protection to those with psychosocial disabilities for the first time!
    (even Human Rights Act exempts some people with mental illness)
32
Q

The is the article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) (2008)?

A

Equal recognition before the law

  • “persons with disability enjoy legal capacity on an equal basis with others in all aspects of life”
33
Q

What is the recent impact of the UN Convention on the Rights of Persons with Disabilities (CRPD)?

A

It recently shaped user and advocacy movements in the Global South

34
Q

What could explain why the ‘Pan-African Network of Users and Survivors of Psychiatry’ change its name to ‘Pan-African Network of People with Psychosocial Disabilities’?

A
  • Adopting the terminology of the Convention for the Rights of Persons with Disabilities (UN)
  • “Users and survivors of psychiatry” are not appropriate in African cultures
  • For some people in the network: “There we don’t have much psychiatry and we don’t want any more”
35
Q

What is the position of WHO on user movements in countries?

A
  • User groups are convened to help official services

- User groups are exclusively associated with mental health service providers

36
Q

What is the problem of the work WHO on promoting user movements in countries?

A
  • WHO only asks about groups associated with clinically-focused providers
  • However, user groups can be about sports, peer-support, can be artistic
37
Q

What are the benefits of peer-support?

A
  • Experiences are shared
  • Injustices can be aired
  • Collective solutions can be found
38
Q

What is the issue with the professionalisation of peer support in the West?

A

Many services have peer workers who are in difficult positions

39
Q

What are the Special Rapporteurs at the UN?

A
  • One responsible for health

- The other responsible for disability

40
Q

What does the Special Rapporteur Dainius Pūras promotes about the right to health in global mental health in his 2017 report?

A

The focus on the brain, neurochemistry, stress, psychopharmacology

  • is only one aspect of global mental health
  • > it can be thought differently

“psychosocial distress would always be part of the human experience [with] growing emergencies, inequalities and discrimination”

“Mental health policies and services are in crisis of power imbalances”, “not chemical imbalances”

“urgent need for a shift in approach”

  • “prioritize policy innovation” at “population level, targeting social determinants”
  • “abandon the predominant medical model”

Global Mental Health (14 decks)

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