Ethics & Methodology

This work package will involve an ethnographic observation of the discussions during three RECs over 12 months, one with a speciality in adults lacking capacity. For all studies I will observe discourse around inclusion, vulnerability, autonomy, capacity and consent and how they are operationalised in the context of participants with reduced capacity and specifically people with a learning disability. I will conduct an ethnographic exploration of discursive constructs and other cues for meaning-making including body language, unspoken concepts, pitch and tone of information delivery – all of the complexity and nuance that is
lost when reading the minutes of such panels (Hedgecoe 2008). I will also examine panel responses to exclusionary and innovative inclusionary research design and to other populations that may be deemed ‘vulnerable’.

I will conduct follow-up interviews with panel members from the observed panels. Dr Janet Holt is chair of an NHS REC panel and a supervisor on this project and will support my access to three panels in the Yorkshire & Humber area. This observational work overcomes Hedgecoe’s critique of methods that investigate only the outputs of ethics panels or studies conducting single observations of a large number of panels rather than exploring the indepth decision-making processes(Hedgecoe 2012; Nicholls et al. 2015). Focusing on three panels and attending them monthly over a minimum of one year allows me to observe the
shared cultural meanings operating in decision making and influencing outcomes.

Pre-submission
I anticipate that studies featuring people with learning disabilities will be infrequent so observation will be enhanced by comparing discussions of studies where the participants are
not deemed ‘vulnerable’, including studies that have an exclusion criterion for people who lack capacity.

I will begin with an autoethnographic analysis of journal entries made by me during my recruitment to an applied health study of reasonable adjustments to diabetes care for people with a learning disability. These journals are recorded after each participant interaction and at relevant moments between them. They interrogate the role of the researcher in exclusion/inclusion decisions and expose the moments of discomfort where the drivers of a research project meet the methodological gold standards of ethical recruitment. This method has been selected to give a voice to the often unarticulated decisions made during recruitment of participants deemed ‘vulnerable.’ It exposes the multiple layers of ambition, guilt, embarrassment and confusion not readily accessible in interviews or observation (Throsby 2018). It exposes relations of power and “offers a novel insight into the social and cultural norms within which those experiences come to make sense” (Throsby 2018). I will continue keeping this journal through recruitment and capacity building for Work Package 2b.

Drawing on the tradition of evocative autoethnography I will attempt to explain the complexity navigated during every research encounter, creating a framework to be revisited when considering ethics panel members’ questions and concerns. However, I will also employ techniques from analytic autoethnography and in doing so explore the tension between those methods and their value in deriving outputs that are recognised as research outputs, and embraced as tools for learning, by the applied health research community. This exercise may be a difficult one as researchers rarely enjoy being the object of research (do Mar Pereira 2017). It may also be personally uncomfortable as autoethnography occupies a space where the researcher must render themselves and their process vulnerable, to establish intimacy with those they observe.

Once I have provided a situated and reflexive account  recruitment, I will interview 40 researchers who have recruited, or have encountered but not recruited, people with learning disabilities into mainstream studies and those who have recruited into LD-specific studies. I will explore with them their own experiences and utilize the reflections of the  autoethnographic work to further open up discussion.

I will draw attention to the assumptions made within capacity assessment, by the very fact they exist for certain people who should be assumed to have capacity until demonstrated otherwise. I will explore ideas of autonomy, vulnerability and trust with researchers on a variety of research projects, across a selection of study types, sizes and settings. I will also explore the researcher’s broad views about the value or otherwise of inclusive strategies, when generating evidence.

The researcher perspective is important in this setting as they are gatekeepers to participation and the ones enacting the legislation and guidance. Always with the researcher Pre-submission is the pressure to recruit to their study, competing with the desire to do no harm which is exacerbated by the perceived ‘vulnerability’ of their participant group (Cumyn et al. 2018).

I will explore the opinions of 15 people with a learning disability and their supporters. I will investigate capacity-building exercises (referencing the Research Voices project in Glasgow) to enhance the interview process; to increase the acceptability of the research methods and to assist engagement with the research process. I will recruit from the People’s Parliament in Leeds (a group of people with a Learning Disability) and other third sector organisations (e.g. People in Action, Tenfold, People First) to capacity building workshops. Participants will explore what research means to them, how they understand capacity and what consent means for them with specific reference to research, acknowledging that for some individuals’ negotiations of capacity, autonomy and consent will be an ever-present part of their everyday life. I will also explore how social disadvantage, gender, ethnicity, sexual orientation, previous experiences, social capital and health all impact on a person’s perspective of these topics. I will examine the role of the researcher as recruiter and explore the interplay between uncertainty and trust in people’s perceptions of research. I will examine “those particular trust-warranting properties and their signs” that are deemed
important to this group (Hedgecoe 2012).

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