Using Photovoice to Explore the Lived Environment and Experience of Older Adults with Frailty on their Kidney Transplant Journey

Author:

Hladek Melissa deCardi1ORCID,Wilson Deborah12ORCID,Krasnansky Katie1,McDaniel Kennedy1,Shanbhag Meera3ORCID,McAdams-DeMarco Mara45ORCID,Crews Deidra C.156ORCID,Brennan Daniel C.7ORCID,Taylor Janiece1ORCID,Segev Dorry4ORCID,Walston Jeremy158ORCID,Xue Qian-Li56ORCID,Szanton Sarah L.16ORCID

Affiliation:

1. Johns Hopkins School of Nursing, Baltimore, Maryland

2. Auckland University of Technology School of Clinical Sciences, Auckland, New Zealand

3. University of Central Florida College of Medicine, Orlando, Florida

4. New York University Grossman School of Medicine Lagoune Health, New York, New York

5. Johns Hopkins University School of Medicine, Baltimore, Maryland

6. Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland

7. Johns Hopkins Comprehensive Transplant Center, Baltimore, Maryland

8. Johns Hopkins Center for Geriatric Medicine and Gerontology, Baltimore, Maryland

Abstract

Key Points Photovoice, a qualitative method, visually depicted the daily lives of participants with frailty, providing insights into independence and symptom management to guide clinicians and researchers.This photovoice study uncovered subthemes of home safety and organization, revealing potential safety hazards like dialysis fluid storage, and suggests its potential use in geriatric nephrology.The findings emphasize the importance of integrating participant values and goals into care decisions and interventional design in the context of kidney transplant journeys for frail adults. Background Older adults with frailty and kidney failure face higher waitlist mortality and are more likely to be listed as inactive on the kidney transplant (KT) waitlist. Photovoice is a qualitative participatory research method where participants use photographs to represent their environment, needs, and experiences. It offers unique insight into the lived environment and experience of patients and may offer direction in how to improve functional independence, symptom burden, and KT outcomes in adults with frailty. Methods This photovoice study was embedded within a larger intervention adaptation project. Participants with prefrailty or frailty awaiting a KT or recently post-transplant took photographs with Polaroid cameras and wrote short descriptions for 11 prompts. Each participant completed a semistructured interview wherein their photographs were discussed. The team coded and discussed photographs and interviews to determine overarching themes and implications. Focus groups were used to triangulate visual data findings. Results Sixteen participants completed both the photovoice and the interview. Participants were a mean age of 60.5 years, 31.2% female, 43.4% self-identifying as Black, and 69% were frail. Outcomes were categorized into seven themes: functional space, home safety, medication management, adaptive coping, life-changing nature of dialysis, support, and communication. Visual data clarified and sometimes changed the interpretations of the text alone. Especially within the themes of home safety and functional space, safety hazards not previously recognized in the literature, like dialysis fluid storage, were identified. Conclusions Photovoice contextualizes the living conditions and experiences of adults with frailty on the KT journey and could be a useful tool in geriatric nephrology and transplant. Addressing issues of home storage, organization, and accessibility should be explored as potential intervention targets. Incorporating participant values and goals into care decisions and interventional design should be further explored.

Funder

NIH/NIA

National Institute of Diabetes and Digestive and Kidney Diseases

NIH/National Institute of Aging

NIDILRR

National Heart, Lung, and Blood Institute

Publisher

Ovid Technologies (Wolters Kluwer Health)

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