What Does It Mean to Be a Patient Research Partner? An Ethnodrama

Abstract

There is a trend in medical and health research to involve patients in the research process. A recent role is the patient acting as a research partner in a team of professionals. There are a few publications about these collaborations and the value of research partners. But is the research partner accepted as a credible knower? How can equality in the collaboration be reached? And how to handle tensions between the research partner's personal agenda and the interests of and burdens on fellow patients? Finally there is the question of how the research influences the research partner's self-perception. The purpose of this article is to investigate these epistemological, relational, ethical, and existential issues, while presenting an ethnodrama. In this drama, the personal narrative of the research partner, a person with a renal disease, unfolds in dialogue with her research mates, whose voices are also present in the text. The article is based on a health research agenda-setting process with the Kidney Association in the Netherlands.

Ethical uneasiness and the need for open-ended reflexivity: the case of research into older people with a wish to die

“…• possible power imbalances and instrumental and exploitative tendencies in research (Abma, 2000;Abma, Baur, Molewijk, & Widdershoven, 2010;Finch, 1984;Finlay, 2011;Head, 2009;Schipper et al, 2010 • doing research into the lives of intimate others like family, students or clients (Ellis, 2007;Etherington, 2007).…”

“…Possibly, the research encounter even strengthened their sense of dignity. But if an interview can empower participants in the meaning-making process (Finlay, 2011;Schipper et al, 2010), it is not inconceivable that it has (indirectly) empowered them in their plans to end life. Indeed, giving participants the chance to articulate their wishes, in what they regard as a secure environment, may result in them becoming clearer about their wishes and commitment to pursue them.…”

Saying the Word: Voice and Silence in an Autoethnography About Chronic Illness

“…The period I wrote about in this chapter was the shortest (approximately a year), and I had very definite views regarding how beneficial dialysis had been to me. I noticed at this stage in my writing process that my narrative of dialysis differed greatly from other dialysis narratives I had read, which were predominantly negative (Cojocaru 2007 Initially, my contention was that these representations of voice and narrative were too mediated; and that the researchers had not been able to spend sufficient time with any of their interviewees (or, in some cases, co-researchers (see Schipper et al 2010)) to get at what the interviewees' or co-researchers' stories really were. I judged narratives that seemed overwhelmingly negative towards dialysis (e.g.…”

Ethics of care in participatory health research: mutual responsibility in collaboration with co-researchers

“…To involve this co-researcher, the first author translated the texts and read them aloud. The last author had experience in writing auto-ethnographies, like ethno dramas (Baur, Abma, and Baart 2014;Schipper et al 2010), counter stories (Teunissen, Visse, and Abma 2015;Woelders et al 2015) and co-constructed auto-ethnographies (Snoeren et al 2016;Snoeren, Niessen, and Abma 2012;Teunissen, Lindhout, and Abma 2018), but the process of collaboratively writing a CAE together in a team with co-researchers with a lived experience was new to all of us. It was a journey in which the decision-making about who collaborated in which part of the AE was coordinated by the first author.…”