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Full-Text Articles in Medicine and Health Sciences
Original Parts: Aging And Reckoning With Cystic Fibrosis Related Kidney Disease, Alexandra Ch Nowakowski
Original Parts: Aging And Reckoning With Cystic Fibrosis Related Kidney Disease, Alexandra Ch Nowakowski
Patient Experience Journal
Kidney disease increasingly impacts people with cystic fibrosis (CF) as adult patients continue to survive longer. Yet the literature on CF related kidney disease focuses little on amplifying the voices of people aging with the condition. This article presents perspectives on CF related kidney disease from a medical sociologist who is themselves managing these issues. It (1) gives an overview of relevant literature and trends in epidemiological data on kidney disease and CF, (2) details the author’s own process of adjusting to progressive changes in renal function, and (3) outlines opportunities for clinicians to make a positive impact for patients …
I’M Going To Tell You A Little About Myself: Illness Centrality, Self-Image And Identity In Cystic Fibrosis, Susan Horky Lcsw, Laura Sherman Licsw, Julie K. Polvinen Ba, Medhavi Saxena Md, Michael Rich Md
I’M Going To Tell You A Little About Myself: Illness Centrality, Self-Image And Identity In Cystic Fibrosis, Susan Horky Lcsw, Laura Sherman Licsw, Julie K. Polvinen Ba, Medhavi Saxena Md, Michael Rich Md
Patient Experience Journal
This study assessed the illness centrality of adolescents with CF and the specific ways that CF may affect adolescents’ identities, through the qualitative analysis of video narratives. Adolescents with CF were loaned video cameras and asked to “show us your life outside the hospital” and to “teach your healthcare team about your CF.” Four major themes were identified related to illness centrality: CF is Central, CF is Compartmentalized, CF is Integrated into Self Image, CF is Denied. Integration and compartmentalization often co-existed. Four themes emerged related to the role of CF in self-image and identity: (1) Valence (positive or negative); …