title: Living with oculopharyngeal muscular dystrophy: a phenomenological study.
abstract: Oculopharyngeal muscular dystrophy (OPMD) is an autosomal dominant form of late-onset muscular dystrophy. Ptosis (droopy eyelids) and dysphagia (difficulty swallowing) are the most common presenting symptoms. The purpose of this phenomenological study was to describe the experience of living with OPMD. Purposeful sampling was used to recruit individuals with genetically confirmed OPMD who displayed ptosis and dysphagia, were 40 years or older, English speaking, and were willing to consent to the tape-recording of the interviews. An unstructured interview format was used to solicit the participants' perspectives of living with droopy eyelids, difficulty swallowing, and a genetic disorder. The interviews were audiotaped and transcribed verbatim. Colaizzi's Method was used to analyze the data, which identified five comprehensive themes. The themes that emerged describing the experience of living with OPMD were "Adjusting to Change", "Managing Misconceptions", "Seeking Normality", "Facing the Future", and "Informing Children". The information derived from this study will assist nurses to identify the burdens of living with OPMD and to intervene appropriately early in the course of the disease.
authors.affiliation: York College of Pennsylvania, York, PA, USA. jkbachan@ycp.edu
authors.forename: Jeanie
authors.initials: J
authors.lastname: Krause-Bachand
authors.forename: Wilma
authors.initials: W
authors.lastname: Koopman
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D017668:Age of Onset; D000368:Aged; D001294:Attitude to Health; D002170:Canada; D017281:Cost of Illness; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D039141:Muscular Dystrophy, Oculopharyngeal / Q000235:genetics / Q000517:prevention & control* / Q000523:psychology*; D024802:Nurse's Role; D015404:Nursing Methodology Research; D036301:Qualitative Research; D011795:Surveys and Questionnaires