M Vukicevic1, J Heraghty2, R Cummins2, B Gopinath3, P Mitchell3. 1. Discipline of Orthoptics, School of Allied Health, Department of Clinical and Community Allied Health, La Trobe University, Melbourne, VIC, Australia. 2. Macular Disease Foundation Australia, Sydney, NSW, Australia. 3. Department of Ophthalmology and Westmead Millennium Institute, University of Sydney, Sydney, NSW, Australia.
Abstract
PURPOSE: 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.
PURPOSE: 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: Richard Schulz; Randy S Hebert; Mary Amanda Dew; Stephanie L Brown; Michael F Scheier; Scott R Beach; Sara J Czaja; Lynn M Martire; David Coon; Kenneth M Langa; Laura N Gitlin; Alan B Stevens; Linda Nichols Journal: Gerontologist Date: 2007-02
Authors: Li Ming Dong; Ashley L Childs; Carol M Mangione; Eric B Bass; Neil M Bressler; Barbara S Hawkins; Marta J Marsh; Päivi Miskala; Harrris A Jaffee; Lee A McCaffrey Journal: Am J Ophthalmol Date: 2004-07 Impact factor: 5.258
Authors: Jennifer K Bambara; Cynthia Owsley; Virginia Wadley; Roy Martin; Chebon Porter; Laura E Dreer Journal: Invest Ophthalmol Vis Sci Date: 2008-12-05 Impact factor: 4.799
Authors: Vladimir Bantseev; Chris Schuetz; Helen S Booler; Joshua Horvath; Kristof Hovaten; Signe Erickson; Ellison Bentley; T Michael Nork; William R Freeman; Jay M Stewart; Giulio Barteselli Journal: Retina Date: 2020-08 Impact factor: 3.975