Transcript Slide 1
Living with OPMD: A Phenomenological Study Jeanie Krause-Bachand, EdD, MSN, RN BC Associate Professor York College of Pennsylvania Department of Nursing York PA 17405 Wilma Koopman, RN, MScN, ACNP, CNN(C) Neuromuscular Clinic University of Western Ontario, Health Sciences London Ontario, Canada N6A 5A5 Problem • Oculopharyngeal Muscular Dystrophy (OPMD) • Late-onset myopathy – – – – Ptosis Dysphagia Dysphonia Proximal limb weakness Ptosis Autosomal Dominant Canadian Connection • Zacharie Cloutier and Xainte Dupont • Single ancestral OPMD carrier chromosome was introduced into the French-Canadian population Background • Dr. Guy Rouleau • PABPN1 mutation • GCG-9 most common • Disease “severity” The OPMD Gene Review of the Literature • Studies related to “droopy” eyelids • Studies related to difficulty swallowing • Studies related to living with a genetic disease Research Design • Qualitative Tradition – – – – – Phenomenology Lived experience Inner world of human beings Uses narration to describe the experience Naturalistic paradigm Purpose • The purpose of this research study was to describe the experience of living with OPMD from the participant’s perspective. Research Questions • What is the experience of having “droopy” eyelids? • What is the experience of having difficulty swallowing? • What is the experience of having a genetic disease? Sample • Purposeful Sampling • Inclusion Criteria – – – – – Diagnosed with OPMD Display ptosis and/or dysphagia 40 years or older English-speaking Consent to tape recording of the interview • Data Saturation Demographics DATA Gender Male Female n = 10 Ancestry 5 5 Age Minimum 49 Maximum 73 Mean 62.9 French-Canadian Russian English German 4 1 1 4 Setting • • • • Central Canada Neuromuscular Clinic Forty individuals diagnosed with OPMD Participant’s home or private conference room at the clinic Data Collection Methods • • • • • • IRB approval from both institutions Informed consent obtained Unstructured interviews Tape recorded 30 – 60 minutes in length Transcribed verbatim Data Analysis • Colaizzi’s Method – Describe the lived experience under investigation – Collect the participants’ descriptions of the experience – Read all the descriptions of the experience – Extract significant statements and articulate the meaning of each Data Analysis – Organize the statements and meanings into themes – Write a narrative description – Return to the participants for validation of the narrative – Incorporate new data into the narrative, if it emerges Findings What is the experience of living with “droopy “eyelids? • “Chin up – shoulders back” • “Things are not always what they seem” Findings What is the experience of having difficulty swallowing? • “Friends and family” • “What does the future hold?” Findings What is the experience of having a genetic disease? • “Different strokes for different folks” Discussion • • • • • Negative impact Physiological stress Psychosocial stress Individual burden Family burden Questions