title: "Fighting the system": families caring for ventilator-dependent children and adults with complex health care needs at home.
abstract: BACKGROUND
  An increasing number of individuals with complex health care needs now receive life-long and life-prolonging ventilatory support at home. Family members often take on the role of primary caregivers. The aim of this study was to explore the experiences of families giving advanced care to family members dependent on home mechanical ventilation.
  
  
  METHODS
  Using qualitative research methods, a Grounded Theory influenced approach was used to explore the families' experiences. A total of 15 family members with 11 ventilator-dependent individuals (three children and eight adults) were recruited for 10 in-depth interviews.
  
  
  RESULTS
  The core category, "fighting the system," became the central theme as family members were asked to describe their experiences. In addition, we identified three subcategories, "lack of competence and continuity", "being indispensable" and "worth fighting for". This study revealed no major differences in the families' experiences that were dependent on whether the ventilator-dependent individual was a child or an adult.
  
  
  CONCLUSIONS
  These findings show that there is a large gap between family members' expectations and what the community health care services are able to provide, even when almost unlimited resources are available. A number of measures are needed to reduce the burden on these family members and to make hospital care at home possible. In the future, the gap between what the health care can potentially provide and what they can provide in real life will rapidly increase. New proposals to limit the extremely costly provision of home mechanical ventilation in Norway will trigger new ethical dilemmas that should be studied further.
authors: Department of Anaesthesiology, Nordland Hospital, 8092 Bodø, Norway. kdybwik@gmail.com
authors: Knut
authors: K
authors: Dybwik
authors: Terje
authors: T
authors: Tollåli
authors: Erik W
authors: EW
authors: Nielsen
authors: Berit S
authors: BS
authors: Brinchmann
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers; D002648:Child; D003258:Consumer Behavior; D005190:Family; D005260:Female; D006301:Health Services Needs and Demand; D006699:Home Care Services; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009664:Norway; D012121:Respiration, Artificial; D055815:Young Adult