Picturing the Experience of Living With Myotonic Dystrophy (DM1): A Qualitative Exploration Using Photovoice

The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses
Kori A LaDonna, Shannon L Venance

Abstract

Myotonic dystrophy presents with multisystemic complications, and there is a well-recognized myotonic dystrophy personality profile that is characterized by executive dysfunction, an avoidant personality, and impaired cognition. Understanding symptom impact on patients' lives is crucial for providing appropriate patient-centered care; however, much of the myotonic dystrophy literature reflects the biomedical model, and there is a paucity of articles exploring patient experience. The aim of this study was to use a novel research approach to explore the experiences of patients with myotonic dystrophy. Nine individuals participated in a qualitative study using the photovoice method. Photovoice uses the visual image to document participants' lives, and participants took pictures pertaining to living with myotonic dystrophy that stimulated individual and focus group interviews. We used content analysis to analyze the data; in turn, codes were collapsed into themes and categories. Findings were presented to participants to ensure resonance. Participants took 0-40 photographs that depicted barriers and facilitators to living successfully with myotonic dystrophy. We identified two categories that include participants' challenges with e...Continue Reading

References

Feb 1, 1997·Journal of Advanced Nursing·J Hill
May 30, 1998·Archives of Neurology·C Delaporte
Aug 26, 1998·Brain : a Journal of Neurology·C E de Die-SmuldersJ P Geraedts
Apr 23, 2004·Expert Opinion on Pharmacotherapy·Raphael M Bonelli, Peter Hofmann
Jul 15, 2011·BMC Neurology·Edith H C CupBaziel G M van Engelen
Mar 2, 2012·The New England Journal of Medicine·Michael J Barry, Susan Edgman-Levitan

❮ Previous
Next ❯

Citations

Jul 21, 2016·Perspectives on Medical Education·Elise Paradis, Patricia J Leake
Jul 7, 2017·Qualitative Health Research·Ebenezer DassahKathleen E Norman
Jul 17, 2018·Singapore Medical Journal·Sayra M CristanchoChristopher Watling
May 1, 2019·Medical Education·Sayra M Cristancho, Esther Helmich
Apr 14, 2015·The Canadian Journal of Neurological Sciences. Le Journal Canadien Des Sciences Neurologiques·Kori A LaDonnaShannon L Venance
May 26, 2017·The Canadian Journal of Neurological Sciences. Le Journal Canadien Des Sciences Neurologiques·Seth A ClimansShannon L Venance
Sep 29, 2020·Journal of Neuromuscular Diseases·Adrianna GuntonKerri Lynn Schellenberg
Nov 3, 2020·Disability and Rehabilitation·Kateri RaymondCynthia Gagnon
Jun 22, 2021·Advances in Health Sciences Education : Theory and Practice·Monica L MolinaroKori LaDonna

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.

Related Papers

The Canadian Journal of Neurological Sciences. Le Journal Canadien Des Sciences Neurologiques
Kori A LaDonnaShannon L Venance
Journal of Transcultural Nursing : Official Journal of the Transcultural Nursing Society
Alvin Chuen Wei SeahWenru Wang
© 2021 Meta ULC. All rights reserved