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Adolescents' embodied experiences of living with chronic kidney disease

O'Neill, Colleen (2020) Adolescents' embodied experiences of living with chronic kidney disease. PhD thesis, Dublin City University.

Abstract
Introduction: Chronic Kidney Disease (CKD) is an enduring and debilitating condition which can have significant physical, psychological and social consequences for anyone experiencing this disease. Navigating CKD in adolescence is particularly challenging; young people are simultaneously inhabiting bodies that are transforming through pubertal processes as well as trying to manage bodies that have been greatly changed by both disease and medical technologies. Inevitably, managing these processes of unpredictable body alteration has a profound influence on how adolescents experience, perceive and use their bodies in the world. However, there is limited research that examines the embodied experiences and perspectives of adolescents living with CKD. The aim of this study is to explore adolescents’ embodied experiences of living with chronic kidney disease Methods: This study employs a narrative inquiry research design incorporating arts-based methodology. Data were gathered using visual body maps (i.e. life-size human body images) and unstructured interviews. Five adolescents (10-17 years) living with CKD participated in the study, which took place over a period of 18 months in both hospital and home settings. The visual and oral narratives of the adolescents were analysed using Riesman's (2008) approach to narrative analysis. Findings: The findings reveal that adolescents experience many bodily changes in living with CKD including disfigurement, scarring, leaking bodily fluids and delays in puberty. The bodily changes negatively affect the adolescents’ perceptions of their bodies and create heightened awareness of their fragile and ill bodies. Adolescents also present a positive attitude and spirit of perseverance in order to endure their illness. A nuanced finding is a disrupted sense of embodied self and identity arising from adolescents’ encounters with medical treatments and technology. The findings also reveal adolescents’ experiences of invisibility and exclusion from medical encounters. Adolescents highlight the need for HCPs to acknowledge them as knowledgeable agents in their illness trajectory. Conclusions: Adolescent participants articulated rich visual and oral narratives regarding their experiences of living with CKD in their bodies at a time of anticipated pubertal change. Embodied experiences are meaningful, and expression of body knowledge by patients provides valuable insights for healthcare practitioners. From a clinical perspective, a multifaceted and holistic adolescent-centred psychosocial care approach is needed to support adolescents living with CKD.
Metadata
Item Type:Thesis (PhD)
Date of Award:November 2020
Refereed:No
Supervisor(s):Casey, Briege and Lambert, Veronica
Uncontrolled Keywords:arts-based research; arts and health,
Subjects:Humanities > Culture
Medical Sciences > Diseases
Medical Sciences > Health
Medical Sciences > Mental health
Medical Sciences > Nursing
Medical Sciences > Pediatric nursing
Medical Sciences > Psychology
Social Sciences > Communication
Social Sciences > Identity
DCU Faculties and Centres:UNSPECIFIED
Use License:This item is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 3.0 License. View License
ID Code:24984
Deposited On:03 Dec 2020 12:22 by Briege Casey . Last Modified 03 Oct 2022 12:52
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