title: Caregiver perceptions about the impact of caring for patients with wet age-related macular degeneration.
abstract: OBJECTIVE
  Caregivers of older persons with eye disease, namely age-related macular degeneration (AMD), have been reported to have a higher than expected distress. Very few studies have explored caregiver perceptions as to what is important when providing care. The aim of this study was to explore the perceptions of caregivers of persons with neovascular AMD in relation to the most important aspects of caring, as described in extended answers to self-administered survey questions.
  
  
  METHODS
  A cross-sectional, self-administered survey of 643 caregivers of people with neovascular AMD, comprising 27 closed-response questions and 2 open ended questions. The latter were analysed as part of this study utilising and 'inductive' Grounded Theory approach.
  
  
  RESULTS
  Six-hundred and forty-three caregiver responses to 2 open ended questions were analysed using an inductive approach and sorted into thematic networks. Three discrete categories arose: The Impact of Caring; Injections and Information and Activities of Daily Living.
  
  
  CONCLUSIONS
  Most caregivers were family caregivers and were found to be compassionate and self-sacrificing. They accepted additional responsibility whilst providing an encouraging environment for their care recipient. As a result, they experience distress and consider their own needs as secondary. Very few seek or receive respite and this added burden can have a negative impact upon the relationship between caregiver and care recipient.
authors.affiliation: Discipline of Orthoptics, School of Allied Health, Department of Clinical and Community Allied Health, La Trobe University, Melbourne, VIC, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Vukicevic
authors.affiliation: Macular Disease Foundation Australia, Sydney, NSW, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Heraghty
authors.affiliation: Macular Disease Foundation Australia, Sydney, NSW, Australia.
authors.forename: R
authors.initials: R
authors.lastname: Cummins
authors.affiliation: Department of Ophthalmology and Westmead Millennium Institute, University of Sydney, Sydney, NSW, Australia.
authors.forename: B
authors.initials: B
authors.lastname: Gopinath
authors.affiliation: Department of Ophthalmology and Westmead Millennium Institute, University of Sydney, Sydney, NSW, Australia.
authors.forename: P
authors.initials: P
authors.lastname: Mitchell
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D003695:Delivery of Health Care; D004645:Empathy; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D012944:Social Support; D011795:Surveys and Questionnaires; D057135:Wet Macular Degeneration / Q000451:nursing*