How might we hold space for, and learn from, embodied discomfort? What does collective care sound like and how do we listen differently? And how can shared experiences of breath(lessness) through creative expression move towards more ‘breathable’ futures?
Image description: Digital illustration with spot colour by Judy Kuo. The illustration contains six people in seated and lying positions, each with a mobile phone nearby. The people are connected by illustrations of sound-waves and with speech bubbles between. There is a woman with dark brown skin and black wavy hair in a wheelchair; a women with light brown skin sitting down next to a therapy dog; a woman with light brown skin wearing a headscarf sitting with her knees up, propped up by pillows and holding a book; a non-binary person with orange hair and pale skin sitting in an armchair knitting; a women with orange hair and light brown skin lying in bed under a checked blanket next to a window with trees and clouds outside; and a seated women with dark brown skin and brightly coloured hair wearing a beanie, with an oxygen tube, a desk with a lamp is by her side. In the centre there are the words ‘Holding Breath’ in dark blue. The speech bubbles read: ‘I’m trying to find rest in movement’, ‘I’ve got my “don’t push me socks on”’, ‘collective listening, care and connection’, ‘Today I’m going to rest and not feel guilty or bad’, ‘my favourite thing is to lie down, t let the weight of my body be held by the ground’, We can connect with people in strange and mysterious ways that we never expect’, and We’ve travelled into someone else’s day, someone else’s life’.
What is this project about?
This is a research project about collective listening, care, and creative connection.
The study invites a small group of women and trans non-binary people to engage in a creative process, making and sharing audio recordings with the aim of sharing experiences of breathlessness [1]. I will ask you to make and exchange short audio voice-note memos, following a simple set of instructions. If you choose, you will also listen to voice-notes made by other participants. These recordings may contribute to a creative archive of experiences of breathlessness (if you opt to have your recording included). I also hope to discover if the process of creating, sharing, and listening to voice notes has beneficial effects (for example, in terms of contributing to feelings of connection, care, wellbeing and solidarity).
This project is primarily designed as a creative project that is enjoyable and stimulating. You do not need to disclose personal health information and are only asked to record experiences you are comfortable to share with others. It is not a project about breathlessness, per se; nor is it a study of clinical ‘symptoms’ or a therapeutic intervention. Rather, I am interested in how we share and listen to diverse experiences, and the collective story they tell.
Through creative methods, the project aims to:
Explore the potential of a co-created network and listening exchange to support care, connection, and wellbeing.
Develop creative processes and protocols for listening across difference.
Co-create an archive of experiences of breathlessness.
Who can participate?
The research study is looking recruit people who meet the following criteria:
18 years and older; and
Women or trans non-binary people; and
Live with long COVID where breathing and breath have been impacted, including sensations of breathlessness [1]; and/or
Lived experience of breathlessness or breathing difficulties that can sometimes be debilitating and/or persistent (Stages 2 and 3 of the study)
Who is conducting the research?
The study is being carried out by me, Dr. Poppy de Souza, as part of my postdoctoral research fellowship with the Big Anxiety Research Centre, Faculty of Arts, Design and Architecture, UNSW Sydney.
The impetus for the project is borne out of my own experience of living with Long COVID and chronic illness / disability and and the debilitating impacts of Long COVID has motivated me to develop this creative research project, and I hope to collaborate with a community of peers who share similar, yet distinct, experiences.
*The project has been approved by the UNSW Ethics Committee (Project Number iRECS0816).
—[1] ‘Breathlessness’ may also include the breath of fatigue, of exhaustion, of grief, of frustration, which have been common experiences and emotions for people living with Long COVID. In other words, I’m interested in breathlessness, broadly defined, in whatever way is meaningful to you.
In this project, we will make, share, listen and respond to short voice-note memos together. A good way to think about them is like a sound version of hand-written letters. They capture everyday moments. I will record the first voice-note memo and send it to your phone. Listen to it and record a response back to me within a week of receiving it. I will then listen and record a second voice-note memo in response, and so forth until we have exchange five voice-note memos between us. […] There are no fixed expectations around what you might want to record. We start with where we’re at, with attention to how our bodies and minds, or bodyminds, are feeling. You might record what seems like ‘nothing’; if that is all you can do, that is something too. This means you can record in your home, in bed, or outside in the fresh air. It is up to you! […] Most importantly, take your time. Go slowly. Breathe.
What will you be asked to do?
Participants will be asked to complete the following research activities if they agree to participate:
Exchange short audio voice-note memos (up to 10 minutes each) recorded via mobile phone app or audio recorder. You will be given instructions to help guide you. Up to five (5) voice-note memos will be exchanged between us . This will take place over approximately three (3) weeks with space for reflection in between.
Take part in an open-ended online interview / debriefing session (via Zoom) to reflect on the experience (30-45 minutes). With permission, this will be audio recorded.
Participants will also have the option to ‘listen in’ to voice-note memos made by other participants (with permission); and/or nominate for their voice-note memos to be heard by other participants (with permission) – this activity is optional and voluntary.
Participants who ‘listen-in’ to other voice-note recordings will be asked to take part in another online interview / debriefing session (via zoom) to reflect on the experience.
The project will occur over three iterations, or stages. Participants may choose to take part in multiple stages/iterations if they meet the inclusion criteria for that stage. The research activities for each stage are the same.
A full description of all research activities, including any risks or discomforts that you may experience while participating in this research is included here.
Interested?
If you’d like to find out more, scan the QR code below, follow the URL link to the Invitation to Participate and Participant Information Sheet and Consent Form (PISCF) or contact me on poppy.desouza@unsw.edu.au
Audio versions of the Participant Information Sheet and Consent forms are available to listen to below:
Scan QR Code for Participant Information Sheet and Consent Form