Participation and Power, Understanding Vulnerability and Risk Activity

Participation and Power, Understanding Vulnerability and Risk Activity

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    8 Comments
    • Melisa Maida

      May 27, 2021, 12:07 am

      1) Definitely in the delivery and dissemination. However, might set up a steering committee to collaborate to plan and design the project. It would be helpful in order to maximise impact, relevance.
      2) Identity, political and emotional risks seem to be the ones that stand out the most for my project.
      3) Helping them to reflect on potential risks and explore solutions i.e anonymising identifiable data if they request. Taking pictures that don’t disclose identity. Working in partnership with organisations that can support participants emotionally. Linking up with charities, key workers if needed. Being aware of local services.

    • Niamh O'Callaghan

      May 27, 2021, 1:13 pm

      1. In my project, delivery and dissemination will be highly participatory. Participant involvement will be a very important to maximise relevance and output. In the workshops there is an opportunity to explore ideas and messages and create more outputs with the participants. An exhibition is planned of the end of our photovoice project, which was decided already by some of the cohort who have already expressed interest in taking part in the project.

      In regards to partnership, we have established relationships with outside organisations for cancer survivors (local and national cancer support groups) and Ulster University to include all a cross-border communication.

      2. Emotional and stigma/labelling risks would be I would be most concerned about with our cohort. Additionally, as we plan to carry photovoice out online (pandemic) I would be worried about technology literacy. As all participants will be giving their time to the project, I want to be respectful of their time and maintain engagement throughout, thus reduce the possibility of drop out rates.

      3. To create a safe space and answers any hopes/fears they have. To reflect on potential risks and explore solutions, for example answering any ethical concerns among the group.
      For stigma/labelling, using ‘cancer survivor’ as a descriptor is certainly an act with good intentions, however people diagnosed with cancer have a diverse array of physical, emotional, social and spiritual needs and the language of survival can be empowering to many of them, however not everyone embraces the term. I think it is important with our group to discuss this and for the project choose their cancer-related identity so that it best reflects their own individual experiences and preferences
      Working in partnership with organisations for example cancer support groups can support participants emotionally if required.
      To have the workshops in practical times for the participants (under 2 hours).

    • Thilo Kroll

      May 27, 2021, 1:46 pm

      Consider 1: Participation. Based on the participatory ladder model above in which phase (planning, designing, delivery, dissemination) would participation be highest in your project? Is there anything you can do to increase participation in other phases of your project? Is that even necessary?

      I don’t have a specific project in mind at the moment. We are working with a range of community stakeholders from ‘seldom heard’ community backgrounds. As part of our Public and Patient Involvement initiative, groups are represented in our university-based executive committee (this is something we want to expand on), where we discuss projects and initiatives (PhotoVoice will likely be a new addition). The PPI/PE work is grounded in Arnstein’s early work. We have expanded on it and adapted the Wellcome Trust approach to what we call the ‘avocado’ of engaged research https://www.ucd.ie/publicengagement/t4media/Avocado%20UCD%20PE.pdf

      We have also developed resources (including a video) to help students and staff to think through the PPI process from planning to dissemination. We will post this shortly. Ideally, research prioritization happens from the outset. This requires relationship building with key organizations. For example, we are closely working with the homeless, disabled, transgender equality, family carers, and other NGOs in the process. Recently, we conducted a research priority exercise in the area of rare diseases. All of this is a process and this course raises further awareness of where we fall short in many of our projects. For example, while we have some awareness of power and vulnerability, I don’t think we fully understand it. Also, we continue to debate the need for ‘training’ in who needs training about what. Often there is a notion that having simple representation on decision-making bodies will be sufficient. But this is not genuine involvement. We are also constantly reflecting on the value base and potential value and benefit discrepancies. All that needs to happen before the project begins and continues throughout and after the study.

      Consider 2: Risks. Based on the list of potential risks. Identify 2 risks and vulnerabilities associated with your own project idea. You can also refer to the risk guidelines provided above.

      One risk we recently identified is around dissemination. In the work, we have done with clients of homeless services we want to involve them in publishing results including photos from the design activities that we engaged in. We had an initial discussion but as results will be published Open Access, they would be associated with ‘homeless’ contributor status for as long as the information will be publicly available. It is presently part of their identity and they are happy to disclose their participation. Would they feel the same, a few years down the line? As co-developers, they were not per se research participants but developers. However, how would they be perceived?

      A second risk (and this has not emerged yet but may possibly be an issue) example relates to people with fluctuating cognitive capacity as a result of dementia or brain injuries. Ireland is in the process of rolling out guidelines for implementing new legislation about the Assisted Decision-Making Capacity Act. It is a very progressive form of legislation in that it fundamentally assumes everyone has the capacity and that assistance needs to be maximized to help people use their right to make decisions. This affects consent dramatically. Say, if we wish to involve someone with fluctuating capacity in a PhotoVoice project, the ability to consent varies over time. So may also their understanding of who has taken the photo, who owns the photo, what the photo represents, and why it was taken in the first place. So, we would need to use process consent to re-consent people over time.

      Consider 3: Providing a Safe Space. Consider some of the ways you might address some of these risks to safeguard your participants and to provide a safe working environment. You can use the file on creating a safe space as a reference point.

      Accessibility and power are probably the most important consideration. Accessibility relates to all forms of physical, social, cognitive or emotional barriers that may preclude safe participation. We need to understand the diverse circumstances and context in which people live and what assistance requirements they may need in relation to preparation for a workshop, transportation, and venue. Assistances may be personal (personal assistants) or technical (assistive technology). It may require covering expenditures for accessible transport that does not leave the participants unduly exhausted (e.g.taxis). It may need to include coverage of costs for personal assistants. We may need to produce material in accessible and alternative formats (ahead and before the meeting). Rooms and venues need to be assessed in terms of physical accessibility but also in relation to their power significance. A photovoice project at the university is not the same as going into the local community or holding it in the NGO, where people feel comfortable. Language needs to be clear, accessible, and not patronizing. Hopes, expectations, and roles need to be examined. There are many more safety considerations. Safety always encompasses physical (environmental), social (structural-relational), and psychological (perceived/experienced) elements.

    • Kate Spelman

      May 27, 2021, 3:55 pm

      Consider 1: Participation. Based on the participatory ladder model above in which phase (planning, designing, delivery, dissemination) would participation be highest in your project? Is there anything you can do to increase participation in other phases of your project? Is that even necessary?

      I would love to have participants involved in all the stages of planning my workshop, but that is probably not possible especially when it comes to budgeting. I wasn’t planning on it, but I wonder if I could create a steering committee of individuals in the community to help design and plan the course of the workshop. This would probably help with recruitment as well as make sure we design a schedule and logistics that make sense for older adults. I am very much willing to give participants control over the outcomes and dissemination of them; I am viewing this as a learning project for myself and would hope that they can come up with better project concept and issues to photograph than I would.

      Consider 2: Risks. Based on the list of potential risks. Identify 2 risks and vulnerabilities associated with your own project idea. You can also refer to the risk guidelines provided above.

      Participants in this workshop would be at risk of stigmatization as members of the LGBT+ community, and at risk for bullying – already a significant worry for many in LGBT+ older adults. (They are particularly worried about bullying as they move from independent living to assited living or long-term care, as they lose some degree of freedom and control.) I would probably give them the option to remain anonymous, if they so choose, as photographs are disseminated. I think there are also always emotional risks involved in a project like this!

      Consider 3: Providing a Safe Space. Consider some of the ways you might address some of these risks to safeguard your participants and to provide a safe working environment. You can use the file on creating a safe space as a reference point.

      I’ve thought a bit about making sure that the workshops are held in a place and at a time that is accessible, so that participants can be a part regardless of their mobiligy level. I’d also like to find a way to neutralize transportation costs, and be close to public transit, so that transportation issues are also minimized. The good thing about virtual/online sessions like this is that these concerns are obviated, although others like access to technology and internet are created.

      I would also like to put time and effort into recruiting at least one co-facilitator who can help make sure the sessions run smoothly and that there are additional emotional supports for participants. We’d use inclusive language, and gender-neutral language as much as possible (although, honestly, some older LGB individuals need help understanding transgender issues/life, so we may have to do some education on this as well). I would want to have a light hand and not ask individuals to self-identify, but invite them to do so if they so choose.

    • Tiffani Luethke

      May 27, 2021, 8:08 pm

      Participation: I work with individuals who have experienced trauma, including refugees and veterans. While I work hard to ensure my participants’ voices are heard, I think they could be further empowered through PhotoVoice by giving them a tool to tell their own stories. I would also like to consider ways to increase participation in the planning phase (e.g., by asking them what they hope to gain from a project, etc.) and the dissemination phase (e.g., by asking them what types of outputs and impacts they would wish for our research to have).

      Risks: One of the greatest risks in my research is the potential for identification of participants. I am still concerned about how the use of photography may potentially increase this risk. However, I think there are ways to help minimize these risks by selecting prompts thoughtfully. I also think it is important for participants to make decisions about these risks themselves (e.g., some participants are not concerned about identifiability, so they should be able to decide which images they wish to share).

      Providing a Safe Space: One thing that has actually improved participant safety in my latest project is the ability to meet via Zoom. Many people feel more comfortable and safer in their own space, so this option (during COVID) has been ideal. I primarily work with participants one-on-on, which can also help facilitate a safe space. As I consider working with groups through the use of PhotoVoice, I think it will be important to set group norms and expectations. Additionally, it will be important to take time to build trust within the group through group activities and discussions to help create a safe space.

    • Candice Salyers

      May 27, 2021, 9:03 pm

      In my project, the highest level of participation would be in the delivery phase, although I am hoping that participation with staff from the community partner organization (although not all of the individual participants) would be collaborating with me in the project design, planning, and dissemination. Reflecting on it now, I am wondering if it might be possible to increase participation in the design phase by offering potential participants a survey through the community partner to discover in what ways they would most like for this kind of project to be carried out.
      Two potential risks for my project are judgement and community risk. I appreciate the ways that both of those are defined by PhotoVoice:
      Community – being involved in a project, and speaking out about an issue, can result in conflict
      or tension within communities.
      Judgment – any process of creativity, dialogue or change brings risks of being or feeling judged.
      To address these risks, I would find it helpful to develop a community statement with the participants so that they have a conversation with each other and greater clarity about how they would describe the project to non-participants in the community. In addition, both being aware of the appropriate level of skill to plan the workshop for as well as checking in with participants about their expectations (and certainly developing ground rules as a group) can help with the concern about judgement.

    • Kelly Walsh

      May 28, 2021, 9:27 am

      Participation: I’d like to improve levels of participation in planning, delivery and dissemination. As a researcher, I’d also add analysis/making sense of findings as this is often where I have the greatest need to challenge myself about how much of my own perspective I’m bringing to the project. I think a steering group including participants can help at all stages of the project. Often I’m responding to an organisation’s ‘invitation to tender’ and I rarely see evidence of participant (or beneficiary) voices in the scope that they set out. I’d like to work with participants to test the assumptions that have been set out in ITTs. I’d also like to include participants in the design of research processes but would welcome advice on meaningful ways to do this. I find that a ‘blank page’ can be daunting for people but I’m aware that taking my ideas to participants as a starting point is more about ‘consultation/involvement’ than ‘partnership/empowerment’. I’m also keen to improve how participants voices are represented in the comms/dissemination activities and outputs of projects. I hope that photvoice – using the pictures and captions of participants – will improve this.

      Risks: I don’t think this is outlined in the risks above but often I’m evaluating projects and services that are highly valued by participants. I’ve experienced (particularly with young people) a desire to say whatever they think will keep these services going rather than true reflections of their experiences. The reality is that funding is competitive and although learning and improvement is valued, publicly highlighting things that don’t work may have consequences. So, the risk is that true and honest reflections on the part of the participants may lead to them losing services that are important to them.

      Secondly, I think community related risks could be an issue for the groups with which I work. Particularly in youth action projects, where young people are driving changes in their community. This can lead to inter-generational tensions.

      Providing a safe space:
      • Informed consent – ensuring participants know what we’re doing, why and what is expected of them. Make sure they know they can withdraw from the process at any point
      • Safeguarding policy in place and appropriate DBS checks
      • Work with a partner that knows the group (or at least the community(s) they are from), ideally with some lived experience if we are focused on a specific community or issue
      • Develop trust – be consistent, thoughtful, respectful, deliver on commitments, listen
      • Confidentiality and ground rules – be transparent and agree together appropriate behaviour
      • Choose somewhere comfortable. Work with the group to decide if this is somewhere familiar (such as a local youth club) or somewhere different that feels ‘special’ (e.g. we’ve done work at the BBC before)

    • Emma Winslet

      May 28, 2021, 12:53 pm

      Consider 1: Participation.

      – Participation will be high within the project in terms of the workshops themselves, but I will certainly think on having a steering group. I would normally leave some flexibility within the weeks of sessions [ leaving a week blank for instance ] in case there is an element of photography that they would really love to explore.
      – I also think that exploring messages and our audience will be very important, and not something I have done before.

      Consider 2: Risks.

      These risks would be potentials, as I will be working with vulnerable women in recovery.

      Emotional risks – disclosure of difficult experiences to the group or wider public.

      Stigma/labeling – being identified with a particular ‘issue’

      Identity risks – being recognized or associated with a particular view or experience.

      Bullying – becoming the focus of other people’s anger or prejudices.

      Judgment – any process of creativity, dialogue or change brings risks of being or feeling judged.

      Uncertainty – unpredictable outcomes.

      Consider 3: Providing a Safe Space.

      – air tight safeguarding and risk assessments for each week, incl different ones for day trips
      – ensuring there is consistency from week to week, in terms of a solid space to meet in
      – checking in with the group at the beginning and end of each session, so it is rounded
      – everyone is assigned a camera, which is exactly the same – which they will have week to week
      – any sessions which will be all day, transport and lunch provided
      – all treated as equal
      – peer mentors to work in the group.

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