PSY1SFP (Flower) 2024 PDF: Ethics of Psychological Research

The ethics of psychological research Working alongside people with lived experience Bec Flower Agenda 1 Introduction 2 Involving people with lived experience 3 Why we involve people 4 Relevant ethical issues 5 Key points Introduction Hi! I’m Bec Flower, teaching and research Lecturer in the Departme...

The ethics of psychological research Working alongside people with lived experience Bec Flower Agenda 1 Introduction 2 Involving people with lived experience 3 Why we involve people 4 Relevant ethical issues 5 Key points Introduction Hi! I’m Bec Flower, teaching and research Lecturer in the Department of Psychology, Counselling, & Therapy My aim is to provide you with clarity and to be approachable (feel free to ask questions!) I tend to talk quickly- if you need me to slow down, let me know. I’m passionate about research ethics, and think a lot about working alongside people with lived experience as a researcher (and engage in research where I have relevant lived experience). I’m excited to be able to chat with you today in PSY1SFP. Be mindful of sharing your lived experience What does it mean to involve people with lived experience in research? Nothing about us without us Who is familiar with this saying? Nothing about us without us In the past, research has often been conducted about groups of people (e.g., people with mental health conditions, neurodevelopmental conditions, people who are disabled), by people without relevant lived experience. Lived experience can be relevant to any research. It is particularly important when working with vulnerable and marginalised groups. Terminology People - experts due to their experience People with lived experience Consumers End users Stakeholders Practices – improving collaboration Co-design/co-creation/co-production Participatory research End user-engagement Community engagement Consumer involvement/consumer-led Patient and public involvement Examples Examples (note) Sometimes people may not report that a project did involve lived experience researchers. There is a need to balance actively engaging in good research practice, and talking about engaging in good research practice. While it’s important that we report how studies were conducted, it’s also important to respect the wishes of team members and not share others’ identities without their consent. It may be possible that members of the research team don’t want to be identified as having lived experience, especially if they are a member of a minority group (may have concerns about safety, power, etc). Levels of involvement Leadership A part of the project team Input at one or more stages of a project Involved as participants (traditional research) Levels of involvement Top section of ladder; Research ‘with’ Bottom section of ladder; Research ‘about’ Ways of involving people (1) Some examples Research team An advisor The research team invites someone with relevant lived experience to be involved in one or more stages of the project Ways of involving people (2) Some examples Research team Multiple advisors The research team invites more than one person with relevant lived experience to be involved in one or more stages of the project Ways of involving people (3) Research team Advisory group The research team invites a group of people with relevant lived experience to be involved in one or more stages of the project. Meetings occur as a group. Ways of involving people (4) Research team Members of the research team have relevant lived experience related to the project. Sometimes referred to as ‘lived experience researchers’ Ways of involving people (5) Research team Community partners The research team work alongside community partners, who have an active role in the project – and may lead it Ways of involving people (6) When we involve people One or multiple time points, or the whole way through Optimally from early stages Deciding on the research question Planning Ethics application Recruitment of participants Data collection Data analysis & interpretation Communicating research findings Why do we involve people with lived experience in research? Why do we involve people with lived experience in research? If we are not a part of the group we are researching, how can we be sure we understand the following? The experience/s relevant to our enquiry What to measure The best way to measure important constructs Cultural awareness and competence Nuance Why we involve people Clinician experience Best evidence Client factors Research literature Researcher experience Participant group characteristics It helps me to think about the evidence-based practice model of psychological therapy, and apply this to conducting research – We can learn from the research evidence, and our experiences, but we also need to learn from the group we are researching (e.g., from community organisations & leaders/advocates, but also from involving consumers in our research) – It’s important we conduct research with, not about Examples We need to be mindful of our biases and assumptions (even if we too have lived experience). This comes across in how we conduct research and what we produce. “Many westerners do not belong to particular groups where tattooing is expected, yet they resort to this primitive method of emotional expression. Many of these individuals congregate in institutions that cater for disordered social behaviour.” - McKerracher & Watson, 1969 Working at a non-profit, capturing employment related data- different to what we might typically collect as researchers Autism research as a non-autistic person (scale item “I am fascinated by dates”) ADHD research as an ADHDer ( scale item “How often do you make careless mistakes when you have to work on a boring or difficult project?”) Consider Think about a time when you felt misunderstood as a member of a particular group (e.g., being a student, your gender, age, challenges you have experienced, etc) Now imagine that research is being conducted that related to this part of your identity. But, none of the researchers seemed to be a part of the group (not that you could see, anyway) Without sharing anything personal about yourself to the classWhat concerns might you have? Where did the research team learn about their research area (Did they learn from people? Written work? Is what they learned accurate or missing any nuance?) Relevant ethical issues and researcher responsibilities Potential impact Understanding of research that will offer value to the community/is needed What impact can lived experience have on research? Assistance identifying important concepts Ability to consider with nuance the possible application of theory Ensuring logical predictions Appropriate measurement of variables & access to participant groups Appropriate data interpretation Communication & translation Potential impact Understanding of research that will offer value to the community/is needed What impact can lived experience have on research? Assistance identifying important concepts Ability to consider with nuance the possible application of theory Can help target some of the issues with research in psychological science that Annukka spoke about last week – e.g., insight into where to recruit to community members (beyond psychology students) Communication & translation Ensuring logical predictions Appropriate measurement of variables & access to participant groups Appropriate data interpretation Research ethics and involvement of people with lived experience Risks if we don’t involve people with lived experience can include: Research Merit - - Focus on issues not important to the community Rationale for study based on inaccurate or harmful assumptions Research may be rejected by the community Respect - Potential for offensive or insensitive language E.g., “suffering” E.g., “avoiding ableist language…” Justice - Inappropriate inclusion/exclusion criteria Beneficence - The design or procedures may not be inclusive or consider the welfare of participants as much as they could have Potential for risk - Possible harm to community E.g., stigma, misunderstanding, intervention for something where it may not be wanted by the community Research ethics and involvement of people with lived experience There is a likely power imbalance between researchers, participants, and people with lived experience who engage in research. Ways to reduce this can include: Using informal language and names without titles Meeting with people in their preferred way/method (e.g., on or off campus, video, face to face) Using nonacademic language Reimbursement for time Ways to provide input that don’t require raising a voice in meetings (may be worry/unable to) Key points 1 Increasingly recognised, expected in some areas 2 There are many ways to involve people with lived experience in research 3 Potential to improve rigour/quality of the research 4 Involving people can improve research communication and translation 5 There is an ethical argument for including people with lived experience in research