Relational Lines: Traversing Researcher/Caregiver Positions

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Abstract

Research can be viewed as a study of traversing lines – crisscrossing lines of communication and ways of moving and perceiving embodied relations with others. My focus here is on multiple relations and identities or positions as researcher and caregiver to family members, especially my husband who has Parkinson’s disease (PD) and other illnesses. Central questions are:
What happens as I traverse multiple relational lines of being a researcher and caregiver in a kinaesthetic sense (referring to my awareness of the position and movements of the body) – and how do these multiple lines impact my research perspective(s)?

My aim is to explore the relational tensions and ethical qualms of narrative and ethnographic approaches to social and arts-based research through exploration of my traversing exemplified in auto-ethnographic imagery and creative writing (figure 1). I pursue personal dimensions of experiences as part of the affective, sensory, and embodied nature of research, inspired by qualitative scholars (e.g., Ellingson 2017; Bochner & Ellis, 2016, Frank, 2013; Ingold, 2016; Markham, 2017; Kirkpatrick, 2020). Ingold proposes that every being must put out a line, and in life these lines tangle with one another (2015).

A particular focus is how my lines cross with others in my family and in an on-going research project. I am one of three researchers at Roskilde University in the collaborative, participatory health research project entitled “Dancing with Parkinson’s”. The core idea for the research project grew out of my participation in a Dance for PD (see https://danceforparkinsons.org) class at Tivoli Ballet School with my husband and I have previously created a composite graphic story about living with Parkinson’s in my family (2019).

The Dancing with Parkinson’s project is founded on concepts of embodied, affective, and aesthetic knowing, using creative, arts-based methods (e.g., Foster, 2016; Leavy, 2019). Project participants include 7 dance instructors and 43 people with Parkinson’s and their dance partners. The Danish Parkinson's Association and Tivoli Ballet School are partners, and the Velux Foundation has financed the project (2019-2022). The research team applies autoethnography as a method for working critically and reflexively with relational ethics and analysis (e.g., Phillips, Christensen-Strynø, Frølunde 2021). We are completing a collaborative graphic medicine book “As we move along” in 2021 (Frølunde et.al., 2021). From its inception, there has been an intention to integrate a graphic novel publication with personal stories aimed at enhancing readers’ empathic understanding of PD and the meaning of dance. However, as a researcher I am ambivalent about telling my personal experience as caregiver.

In regard to addressing my question on what happens to me as a researcher and as caregiver – a rather obvious answer is to listen to and rely more on my kinaesthetic knowledge or “gut feeling” in order to clarify my research perspectives. This involves reflecting on the ethical dilemmas in this, or any, research involving serious illness as often discussed in the narrative and graphic medicine fields.

A useful approach for me is applying arts-based narrative and visual inquiry. Creative writing can explore, for example, an emotional discomfort and sense of being stuck, which is kinesthetic and difficult to express rationally. I suggest that the complexity of entangled roles (such as being a caregiver to ill relatives and researching Parkinson’s) creates many turbulent, crossing lines.

Navigating ambiguous ethical and emotional territories of personal and private experience is challenging in research. The notion of neutrality and objectivity is often discussed in feminist research which seeks to revise this construct of the scientist. I propose that reflexivity of the researcher about private/public intersections is necessary especially when research concerns illness and involves establishing trust with vulnerable research project participants.
OriginalsprogEngelsk
Publikationsdato5 jan. 2022
StatusUdgivet - 5 jan. 2022
BegivenhedInternational Symposium on Autoethnography and Narrative - online, USA
Varighed: 3 jan. 20225 jan. 2022
https://iaani.org/2022isan/

Konference

KonferenceInternational Symposium on Autoethnography and Narrative
Lokationonline
Land/OmrådeUSA
Periode03/01/202205/01/2022
Internetadresse

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