Dr Deborah Wilson1
1AUCKLAND UNIVERSITY OF TECHNOLOGY, NORTHCOTE, NEW ZEALAND
Biography:
Dr Wilson has worked as a registered nurse internationally for the last 30 years. Her research focuses on addressing health inequities in marginalized populations. Wilsons current research involves investigating ways to reduce inequities in the kidney transplant waitlist population, developing interventions to help decrease time on the transplant waitlist. Dr Wilson has also used Community Based Participatory Research to work with Native American communities to adapt implement and evaluate sustainable culturally informed interventions to promote and strengthen Native early childhood educations teachers’ health and well-being.
Wilson currently works as a senior lecturer at Auckland University of Technology, Aotearoa New Zealand
Abstract:
Background
A committee of kidney transplant individuals consisting of Māori and non-Māori members requested a way that their experience of kidney disease could be heard.
Aim
To explore the lived experience of individuals on kidney replacement therapy, or have received a transplant to find ways to empower and support them to improve well-being; To co-create a narrative with study participants for public education, inform health service design and delivery, and public policy pertaining to kidney transplant.
Methods
Photovoice is a Participatory Research method. Participants take photos that express their experience of the kidney disease journey focusing on their appraisal of dialysis and transplant related stressors, coping strategies, and factors and that influence their ability to live successfully and with purpose. Participants are then interviewed to discuss their photos and why they chose them. Interviews are qualitatively analysed along with the photos to build a story board to bring back to participants for input.
Results:
Of 20 individuals recruited 15 have completed the study. Initial findings were presented to a community of kidney failure individuals who discussed the photos and identified the following themes: Life can be beautiful -cherish the little moments; Fear/Uncertainty always looms – it’s a long road to nowhere; Knowledge is power; Communication is key; Invisible but not alone.
Conclusion
While recruitment continues to capture rural as well as urban areas the emerging data reveals individuals who are disciplined, determined, navigating a lot and in need of support, education and who don’t want their journey to be invisible.