Participatory Practice in Research (PPI)

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Questions and Answers

What does the concept of 'expertise through experience' refer to in research involving individuals with lived experience?

  • Technical training in mental health research
  • Understanding derived from personal experiences with a certain disorder (correct)
  • Knowledge gained from formal education
  • Skills developed through volunteering in research

Which of the following is considered a practical difficulty in involving lived experience in research?

  • A general lack of interest in mental health research
  • Having sufficient volunteers with lived experience
  • The requirement for research funding to include lived experience (correct)
  • The abundance of resources available for research

What issue is associated with the misunderstanding that people with mental illnesses are universally more vulnerable psychologically and cognitively?

  • Vulnerability assumption (correct)
  • Tokenism
  • Identity confusion
  • Hierarchy in research

What is the purpose of advance choice documents in research involving service users?

<p>To outline treatment plans for service users if they become unwell (D)</p> Signup and view all the answers

Which aspect of research does the concept of intersectionality highlight?

<p>The importance of privilege and power dynamics (A)</p> Signup and view all the answers

What is the primary purpose of involving people with lived experience in research?

<p>To challenge assumptions and improve research quality (B)</p> Signup and view all the answers

Which term best describes the collaborative model in which stakeholders participate throughout the research process?

<p>Co-production (C)</p> Signup and view all the answers

What is a potential pitfall of public involvement in research?

<p>Tokenism and lack of genuine participation (A)</p> Signup and view all the answers

How does co-design differ from traditional research methods?

<p>It applies co-production principles to design interventions and services. (A)</p> Signup and view all the answers

What is meant by 'nothing about us, without us' in the context of research?

<p>The perspectives of those affected should be included in decision-making. (D)</p> Signup and view all the answers

Which of the following best describes public engagement in research?

<p>Involving the public in listening and developing understanding (D)</p> Signup and view all the answers

Which of the following is NOT a role of service user involvement in research?

<p>Deciding the funding allocation for the study (A)</p> Signup and view all the answers

What can be a consequence of lack of support and training for participants involved in research?

<p>Reduced authentic involvement (D)</p> Signup and view all the answers

What is a significant challenge when involving individuals with lived experience in the research process?

<p>Requirement for funding to include lived experience (D)</p> Signup and view all the answers

Which of the following concepts focuses on ensuring individuals have an equal say in the research process?

<p>Managed democracy (D)</p> Signup and view all the answers

What is a potential misconception regarding individuals with mental illness in the context of research?

<p>They are universally more vulnerable psychologically and cognitively. (B)</p> Signup and view all the answers

What issue arises from engaging service users in research only at the end phases?

<p>Increased chances of tokenism (A)</p> Signup and view all the answers

What does the principle of intersectionality in research emphasize?

<p>Considering privilege and power dynamics (C)</p> Signup and view all the answers

What is the main ethical principle highlighted in the context of involving people with lived experience in research?

<p>Nothing about us without us (D)</p> Signup and view all the answers

What is a key benefit of incorporating service users in research activities?

<p>Improved relevance of research questions (C)</p> Signup and view all the answers

Which group is typically NOT included as participants in service user involvement?

<p>Research funders (D)</p> Signup and view all the answers

Which of the following describes coproduction in research?

<p>A collaboration where power is equally shared among all stakeholders (D)</p> Signup and view all the answers

What is a potential consequence of tokenism in research involving lived experience?

<p>Decreased trust among stakeholders (B)</p> Signup and view all the answers

Which aspect of research does public engagement primarily focus on?

<p>Listening and interacting with non-specialists (C)</p> Signup and view all the answers

What does the term 'blurred boundaries' refer to in the context of service user involvement?

<p>The overlap between personal experience and professional recruiting (D)</p> Signup and view all the answers

Why is training and support crucial for participants in service user involvement?

<p>To ensure participants understand their responsibilities (A)</p> Signup and view all the answers

Flashcards

Lived experience research

Research involving individuals with experience of a particular condition throughout all stages, recognizing their expertise.

Person-centered care

Tailoring care to individual needs and experiences, considering unique situations, while maintaining clinical best practices.

Coproduction in research

Incorporating people with lived experience in all research stages, respecting autonomy and decisions while acknowledging practical constraints.

Tokenism in research

Superficial inclusion of individuals with lived experience, often done late in the process or lacking meaningful contribution.

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Intersectionality in research

Considering different social identities (e.g., race, gender, class) and their impact when researching experiences of illness

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PPI

A broad term encompassing all forms of involvement, even limited ones like consultation. It is crucial for funding and for research's success involving stakeholders.

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Co-production

Research in which all stakeholders collaborate throughout the entire research process, leading to a shared power and responsibility model.

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Participatory research

Research designs where researchers empower participants (community members) to have more control of the research process.

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Co-design

Applying co-production principles to creating interventions and services.

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Service user involvement

Involves service users in research; designing, conducting, and reporting research; and often includes participants, staff, and relatives.

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Public engagement

Involves specialists having meaningful discussions and developing understanding with non-specialists (the public).

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Research impact

The effects research has outside of academia (on society and the economy).

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"Nothing about us, without us"

A principle emphasizing the importance of involving people with lived experience in research and other relevant activities for improved research and reduced stigma.

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Autonomy in Research

The principle of allowing individuals, particularly those with lived experience, to make their own decisions about their involvement in research.

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Expertise Through Experience

The unique knowledge and insights gained by individuals from living with a specific condition or disorder.

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Advance Choice Documents

Plans that allow service users to express their preferences for future treatment in case they become unable to make decisions themselves.

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Why involve people with lived experience?

Incorporating individuals with direct experience of a condition or issue in research brings valuable insights, ensuring research is relevant, ethical, and impactful.

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What are the potential pitfalls of involving people with lived experience in research?

Challenges include tokenism, inadequate support, lack of fair compensation, and conflict between collaboration and established systems.

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Study Notes

Participatory Practice in Research (PPI)

  • PPI is a broad concept encompassing various levels of involvement, including consultation, aimed at improving research.
  • Essential for securing funding; crucial in research design, involving stakeholders in determining research questions and methodology.
  • Participants usually represent diverse groups including service users, staff, and relatives.
  • PPI's core principle is "Nothing about us without us," emphasizing the right for people with lived experience to shape research impacting their lives.

Service User Involvement

  • Service users can be directly involved in research, from designing data collection to analyzing data and report writing.
  • Terminology includes peer researchers, service user researchers, survivor researchers, and lived experience researchers.
  • Recruitment prioritizes relevant skills and experience alongside personal lived experience.
  • Crucially, training and support are fundamental.
  • Lived experience can become a criterion for recruiting research staff.

Co-production

  • A collaborative approach; stakeholders work together throughout the research process, sharing power and responsibility for decision-making.
  • A radical approach to research, moving beyond traditional approaches to research.

Participatory Research

  • Research designs where researchers cede power to research participants (community members).

Co-design

  • Applying co-production principles to design interventions and services.

Public Engagement

  • Engaging non-specialists with specialists.
  • Encompasses a range of activities from consultation to disseminating research outputs.

Research Impact

  • Research impact extends beyond academia, influencing society and the economy.

Pitfalls in PPI

  • Tokenism (insufficient authentic involvement).
  • Lack of adequate support, training, and mentorship.
  • Insufficient reimbursement.
  • Potential tensions between collaboration and broader systems.

Co-production: A Lived Experience Perspective

  • Improves research quality and impact.
  • Challenges stigma and disempowerment.
  • Involves people with lived experience in all stages of research; people with specific experiences have expertise through their experience.
  • Aligns with person-centred care principles, ensuring holistic views and needs are met.
  • Essential for ethical and socially just research.

Practical Difficulties

  • Funding requirements; increasing emphasis on lived experience input.
  • Resource limitations (financial, time, training).
  • Accommodation for illness; ensuring lived experience isn't conflated with their condition.
  • Prioritization issues; accommodating lived experience perspectives in research.

Issues

  • Tokenism (tick-box approach, late integration of co-production).
  • Vulnerability assumptions (misperceptions regarding mental illness vulnerability).
  • Identity considerations (research backgrounds and lived experience can overlap).
  • Hierarchy concerns (equal status within research).
  • Representativeness concerns (diverse and inclusive representation).

Advance Choice Documents

  • Planning for future treatment in case of illness recurrence.
  • Embedding co-production principles.

Intersectionality

  • Acknowledging intersecting privileges and power dynamics.
  • Maintaining a broad perspective in research.

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