Participatory Research and Informed Consent: using lived experiences to encourage active involvement

Good qualitative research is not yielded through hierarchic relations between researcher and participant. It is not a facet of positivist exploration wherein the supposedly neutral observer attempts to formulate objective understanding. Rather, good qualitative research requires diminishing researcher power and a reimagining of the status of the participant. These deliberate acts shatter the assertive lens through which we regularly view the participant, empowering them to use their experiences to make decisions and affect their futures.

This proposition highlights the value of acknowledging participant agency within qualitative research. It emphasises that participants are not sponges who absorb information and act accordingly. Rather, actors hold implicit and explicit stores of knowledge which enable them to operate within and shape environments. In this way participants should not simply be viewed as the passive products of their social worlds. Instead, they should be understood to hold invaluable and often concealed intelligence relating to the conditions for and components of phenomena.

Several research schools have led the charge towards recognising participant agency. Participatory and emancipatory researchers, for example, conceive of researchers and participants as equal and, perhaps, interchangeable actors. They do not see why those who might conventionally be considered as participants cannot take part in, steer and ultimately administer research projects. This is because these actors have a pre-existing understanding of phenomena and can provide insider perspectives, ask better questions and speak to frequently ignored issues. Such a perspective is viewed in the work of Survivor Researchers who use their lived experiences of Mental Health issues to collect and analyse data.

Of course, the involvement of participants in research occurs across a continuum. What may be applicable, and perhaps even desirable, in Survivor Research might not work in other forms of exploration. Thus, researchers must consider whether and how they can incorporate lived experiences within the confines of their research projects. In this way Glasby and Beresford’s (2008) Knowledge Based Practice provides a useful framework through which to conceptualise the role of participants in research. This framework both speaks to the value of including lived experiences when planning research and articulates that this proposition is not applicable in all scenarios. In doing this Glasby and Beresford suggest that lived experiences should inform research projects examining issues of social justice, power and marginalisation.

One way of including lived experience in research is through the process of gaining informed consent. Conventionally this process has been viewed as a singular event in which:

  1. The researcher initially describes the research to a potential participant.
  2. The researcher asks the potential participant whether they would like to take part.
  3. The participant accepts or declines the invitation.

Whilst this process is useful and time efficient in large scale quantitative research, it can reify the act of giving consent. This is because it treats the outcome of this process as unalterable and enduring; a fossil that captures a singular moment in which a person, to a greater or lesser extent, gave their permission to take part in a research study. Such a process does not account for difference, change, fallibility and unpredictability. It does not encourage participants to take charge, inform research, engage with peers and researchers and adjust their perspectives. Rather, it captures participants within a process about which they have had little control and within which their lived experiences are subordinate to matters of procedure.

Participatory and emancipatory researchers criticise this perspective. They speak to the value of responsive and open-ended processes in which participants and researchers co-produce notions of consent. In doing this, researchers focus the process of attaining consent on the lived experiences of participants and alter their approaches to reflect contextually appropriate issues. For example, researchers may co-produce the process of attaining consent to ensure that participants fully understand the implications of taking part in a qualitative research project. Thus, researchers may work with participants to explore their respective histories of voluntary and/or involuntary participation as a means of producing a shared language for involvement.

This approach is reflected in my current research project. In examining the lived experiences of people with Learning Disabilities in Essex I have worked to engineer flexible and responsive processes through which to attain consent. I have sought to use introductory conversations with prospective participants to explore how self-reported variables such as marginalisation, infantilisation, notions of care and frustration with surveillance impact on conceptions of research. I then utilized this emerging understanding to create an adaptable process of attaining consent that lasts for the duration of the project. This process consists of:

  1. Opportunities to read and engage with a Participant Information Booklet, the format and style of which reflected accessibility issues raised in introductory conversations.
  2. Open-ended consent forms in which participants were given the power to choose when, where and how they would participate.
  3. Processes of reconsent in which the initial provision of consent would be renegotiated to reflect changes in the lives and preferences of participants and alterations to the research objectives and methods.
  4. Regular opportunities to engage with the researcher, thereby providing a means to ask questions, raise concerns and feed in to reconsent processes.

In using this process, I hope to afford participants opportunities to fully engage in the research project. By conducting initial conversations and exposing participants to processes of consent and reconsent I aim to build lasting relationships as a means of understanding lived experiences and facilitating active participation. These actions may, consequently, enable participants to share their perspectives in later research interactions and ultimately take part in the production of outcomes that address genuine and meaningful issues.

Dr Tom Kerridge

Research Officer, Healthwatch Essex