title: Hard to Swallow: A Phenomenological Exploration of the Experience of Caring for Individuals With Myotonic Dystrophy and Dysphagia.
abstract: OBJECTIVE
  Myotonic dystrophy (DM1), a genetic, multisystemic disorder, is the most prevalent adult form of muscular dystrophy. Dysphagia is a common symptom that may be difficult to diagnose and treat and can be associated with increased morbidity and mortality. Preexisting cognitive impairment or apathy, both well described in the DM1 literature, may contribute to management challenges. Caregivers may become important for managing a family member's swallowing dysfunction. Although clinicians place great importance on swallowing difficulties, it is unknown how dysphagia impacts patients and their caregivers. Therefore, the purpose of this study was to explore the experiences of caregivers living with those with DM1and dysphagia.
  
  
  METHODS
  An interpretive phenomenological approach was used to study the lived experience of six caregivers for individuals with DM1 and dysphagia. Audio-taped semistructured interviews were used for data collection, and data were analyzed using van Manen's steps for phenomenological analysis.
  
  
  RESULTS
  Despite the potential for dysphagia to cause morbidity and mortality in individuals with DM1, caregivers did not describe this as a problematic symptom. Instead, they highlighted more debilitating symptoms like fatigue or weakness and discussed the caregiving experience. Themes pertaining to participants' lived body, lived relationality, lived time, and lived space were identified.
  
  
  CONCLUSIONS
  Healthcare providers need to balance issues of clinical concern with those that are important for individuals and their family members. Assessments of caregiver knowledge and burden at each clinic visit may be warranted.
authors.affiliation: Kori A. LaDonna, PhD, is a Postdoctoral Fellow, Centre for Education Research & Innovation, Schulich School of Medicine & Dentistry, Western University, London, Ontario, Canada. Wilma J. Koopman, RN(EC) MScN NP, is Nurse Practitioner, UniversityHospital, London Health Sciences Centre, London, Ontario, Canada. Susan L. Ray, RN PhD CNS APN, is Associate Professor, Arthur Labatt School of Nursing, University of Western Ontario, London, Ontario, Canada. Questions or comments about this article may be directed to Shannon L. Venance, MD PhD FRCPC at Shannon.Venance@lhsc.on.ca. She is an Associate Professor, Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, and University Hospital, London Health Sciences Centre, London, Ontario, Canada.
authors.forename: Kori A
authors.initials: KA
authors.lastname: LaDonna
authors.forename: Wilma J
authors.initials: WJ
authors.lastname: Koopman
authors.forename: Susan L
authors.initials: SL
authors.lastname: Ray
authors.forename: Shannon L
authors.initials: SL
authors.lastname: Venance
mesh_terms: D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003680:Deglutition Disorders / Q000209:etiology / Q000451:nursing*; D005221:Fatigue / Q000209:etiology; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009223:Myotonic Dystrophy / Q000150:complications / Q000451:nursing*