title: The 'wayfinding' experience of family carers who learn to manage technical health procedures at home: a grounded theory study.
abstract: BACKGROUND
  With more care taking place in the home, family carers play an important role in supporting patients. Some family carers undertake technical health procedures generally managed by health professionals in hospital settings (e.g. managing a tracheostomy or enteral feeding).
  
  
  OBJECTIVE
  To explore how family carers learn to manage technical health procedures in order to help health professionals better understand and support this process.
  
  
  METHODS
  A grounded theory study using data from interviews with 26 New Zealand family carers who managed technical health procedures including nasogastric or gastrostomy feeding, stoma care, urinary catheterisation, tracheostomy management, intravenous therapy, diabetes management and complex wound dressings. Most (20 participants) were caring for their child and the remaining six for their spouse, parent or grandparent. Following grounded theory methods, each interview was coded soon after completion. Additional data were compared with existing material, and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was developed. Interviewing continued until no new ideas emerged and concepts were well defined.
  
  
  RESULTS
  The core concept of 'wayfinding' indicates that the learning process for family carers is active, individualised and multi-influenced, developing over time as a response to lived experience. Health professional support was concentrated on the initial phase of carers' training, reducing and becoming more reactive as carers took responsibility for day-to-day management.
  
  
  CONCLUSIONS
  Wayfinding involves self-navigation by carers, in contrast to patient navigator models which provide continuing professional assistance to patients receiving cancer or chronic care services. Wayfinding by carers raises questions about how carers should be best supported in their initial and ongoing learning as the management of these procedures changes over time.
authors.affiliation: Department of Primary Health Care and General Practice, University of Otago, Wellington, New Zealand.
authors.forename: Janet
authors.initials: J
authors.lastname: McDonald
authors.affiliation: Department of Primary Health Care and General Practice, University of Otago, Wellington, New Zealand.
authors.forename: Eileen
authors.initials: E
authors.lastname: McKinlay
authors.affiliation: Department of Medicine, University of Otago, Christchurch, New Zealand.
authors.forename: Sally
authors.initials: S
authors.lastname: Keeling
authors.affiliation: Rehabilitation Teaching and Research Unit, Department of Medicine, University of Otago, Wellington, New Zealand.
authors.forename: William
authors.initials: W
authors.lastname: Levack
mesh_terms: D000328:Adult; D017028:Caregivers / Q000193:education* / Q000523:psychology; D002648:Child; D005190:Family / Q000523:psychology*; D005260:Female; D066296:Grounded Theory; D006699:Home Care Services; D006801:Humans; D007858:Learning; D008297:Male; D009520:New Zealand; D010290:Parents
keywords: New Zealand; complex care; family carers/caring; grounded theory; informal care; nurse educator; technology dependence; training for family carers