The Caregiving Journey: Arts-Based Methods as Tools for Participatory Co-Design of Health Technologies
Abstract
:1. Introduction
1.1. Opportunities for Transformative Learning through Participatory Co-Design and Arts-Based Methods
1.2. Arts-Based Methods: Photo-Elicitation, Photography, Cartoons, Drawings, and Poetry
2. Materials and Methods
2.1. Participants
2.2. Procedure
2.3. Data Collection
2.4. Data Analysis and Analytical Approach
2.5. Reflexivity, Rigor and Dissemination
3. Results
3.1. Theme 1: Crisis to Crisis—The Caregiving Stress Rollercoaster
Stress he is so stubborn he can’t do anything can’t use cutlery can’t make a cup of tea can’t carry it he sits there he has bowel accidents he drools— I lean over wipe his chin Other people look at him that doesn’t bother me. But I get frustrated. I have been getting cranky with him snap at him, sworn at him. what’s going to happen if I die from stress? Eli. | Frustration I get frustrated we had planned to do a lot we can’t do. So, I kick things I went out punched the palings out of the fence. I have osteoporosis— So I broke all my knuckles. Eli. |
3.2. Theme 2: Adapting, Adjusting and Caring, with Love
3.3. Theme 3: The Invisible, Unsupported Carer—Alone, Tired, and Grieving
Cry Forever Until he died I didn’t even realise— how deeply I loved him. I did two years of grief counselling— I don’t think it’s ever going to help me. I still sit here, cry every day. I look at photos—and I cry I think—I am going to cry forever. Diane | Friendship Sick with— agony, pain, vomit. Vomiting, every single day and night Vomiting up to 20, 25 times. Couldn’t eat anything But I sat with her, slept with her, holding her hand— with my friend. Dianne |
LOSSI misshis touch.He would walk past mein the kitchenHe would puthis hands, on my shoulders—you know.
And I took him for granted.I knew I had a great husband—he always did everything for me.But I didn’t know—how great he was, you know.
Since he’s died,the stuff I have had to learn—to put a light bulb in.I have never done that.I dwell on—stuff like that.Dianne
3.4. Theme 4: Could Technology Help Me?
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
1 | See details on the project and exhibition here: https://ourcarejourney.wordpress.com (accessed on 22 June 2022). |
2 | Unfortunately, due to commercial reasons the app is not currently on the market. |
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Miller, E.; Zelenko, O. The Caregiving Journey: Arts-Based Methods as Tools for Participatory Co-Design of Health Technologies. Soc. Sci. 2022, 11, 396. https://doi.org/10.3390/socsci11090396
Miller E, Zelenko O. The Caregiving Journey: Arts-Based Methods as Tools for Participatory Co-Design of Health Technologies. Social Sciences. 2022; 11(9):396. https://doi.org/10.3390/socsci11090396
Chicago/Turabian StyleMiller, Evonne, and Oksana Zelenko. 2022. "The Caregiving Journey: Arts-Based Methods as Tools for Participatory Co-Design of Health Technologies" Social Sciences 11, no. 9: 396. https://doi.org/10.3390/socsci11090396