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End of living: maintaining a lifeworld during terminal illness
Authors:Judith Wrubel  Michael Acree  Steffanie Goodman  Susan Folkman
Affiliation:1. Osher Center for Integrative Medicine, University of California San Francisco , 1701 Divisidero, San Francisco, 94115 United States wrubelj@ocim.ucsf.edu;3. Osher Center for Integrative Medicine, University of California San Francisco , 1701 Divisidero, San Francisco, 94115 United States
Abstract:The narrative responses of 32 people with AIDS or cancer with survival prognoses of 6 months to a year to monthly interview questions about their daily lives were analysed with a team-based qualitative methodology. Two groups emerged: (a) a Maintained Lifeworld Group characterised by one or more of the following: continued engagement with family, friends, and community; the ability to relinquish untenable goals and substitute new, realistic ones; engagement in spirituality and a spiritual practice; and, (b) a Lifeworld Interrupted Group characterised by one or more of the following: relocation just before or during the study, cognitive impairment, commitment to untenable goals, ongoing substance abuse. Understanding how people with a terminal illness can maintain a lifeworld and experience well-being while also managing the physical challenges of their illness could help inform the support offered by professional and family caregivers to improve care recipients’ quality of life.
Keywords:AIDS  cancer  end-of-life  lifeworld  terminal illness
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