title: Lifestyle Implications of Home Mechanical Insufflation-Exsufflation for Children With Neuromuscular Disease and Their Families.
abstract: BACKGROUND
  Mechanical insufflation-exsufflation (MI-E) is increasingly used in the home management of children with neuromuscular disease. Research to date has focused on the effect of MI-E on physical health. The aim of this study was to qualitatively investigate the impact of home MI-E on the child and family's lifestyle.
  
  
  METHODS
  Eight parents and 3 children participated in semistructured interviews.
  
  
  RESULTS
  Five themes emerged from parent interviews demonstrating: (1) lifestyle implications, (2) parents becoming experts, (3) parents developing a sense of control over their child's condition, (4) an element of extra care, and (5) impacts on the parent-child relationship. Developing themes from the child interviews showed them adjusting to and then relying on the device. Home MI-E medicalized the home, but the overall lifestyle impact was positive.
  
  
  CONCLUSIONS
  Although involving a small number of subjects, this study demonstrated a mixture of opposing impacts of home MI-E on lifestyle, both enabling and disabling, which need to be considered when introducing home MI-E. The positive impacts included greater ability to manage the child's health, including avoidance of hospital admissions. Negative impacts were greatest for those parents who were sole operators of the device, including a frequently disrupted lifestyle.
authors.affiliation: Department of Physiotherapy fiona.moran@rch.org.au.
authors.forename: Fiona C
authors.initials: FC
authors.lastname: Moran
authors.affiliation: Department of Physiotherapy, Melbourne School of Health Sciences, University of Melbourne, Victoria, Australia. Murdoch Childrens Research Institute, Parkville, Victoria, Australia.
authors.forename: Alicia J
authors.initials: AJ
authors.lastname: Spittle
authors.affiliation: Children's Bioethics Centre, The Royal Children's Hospital, Parkville, Victoria, Australia. Department of Physiotherapy, Melbourne School of Health Sciences, University of Melbourne, Victoria, Australia.
authors.forename: Clare
authors.initials: C
authors.lastname: Delany
mesh_terms: D000293:Adolescent; D000328:Adult; D001315:Australia; D002648:Child; D002675:Child, Preschool; D005195:Family Relations / Q000523:psychology*; D005260:Female; D006699:Home Care Services; D006801:Humans; D007327:Insufflation / Q000295:instrumentation / Q000523:psychology*; D007407:Interviews as Topic; D008019:Life Style; D008297:Male; D009468:Neuromuscular Diseases / Q000523:psychology; D010290:Parents / Q000523:psychology; D036301:Qualitative Research; D012131:Respiratory Insufficiency / Q000209:etiology / Q000628:therapy; D012138:Respiratory Therapy / Q000379:methods / Q000523:psychology*
keywords: Duchenne muscular dystrophy; lifestyle; mechanical insufflation-exsufflation; neuromuscular disease; pediatric; spinal muscular atrophy