Experiences and Perspectives on Advance Care Planning among Individuals Living with Serious Physical Disabilities
| Autor: | Suzanne E. Mitchell, John F. Loughnane, Sabrina K. Stewart, Gabriela M. Weigel, Morgan Mako |
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| Rok vydání: | 2016 |
| Předmět: |
Advance care planning
Gerontology Adult Male Decision support system 0603 philosophy ethics and religion Interviews as Topic 03 medical and health sciences Advance Care Planning 0302 clinical medicine Nursing Healthcare delivery Medicine Humans Disabled Persons 030212 general & internal medicine Patient participation General Nursing Qualitative Research Aged business.industry 06 humanities and the arts General Medicine Middle Aged Anesthesiology and Pain Medicine Key informants Female 060301 applied ethics Thematic analysis Patient Participation business Advance Directives Healthcare system Qualitative research |
| Zdroj: | Journal of palliative medicine. 20(2) |
| ISSN: | 1557-7740 |
| Popis: | Despite frequent encounters with the healthcare system and high risk for secondary conditions, it is unclear how frequently individuals living with serious physical disabilities document advance directives (AD) or engage in advance care planning (ACP). Their perspectives on these topics are largely unknown.We aimed to characterize the perspectives of individuals with serious physical disabilities receiving care from two different healthcare delivery settings on the value of AD and ACP.Key informant interviews were conducted, audiorecorded, transcribed, and analyzed using thematic analysis and constant comparative analysis.Twenty-five adults with serious physical disabilities were interviewed.Five organizing themes emerged as follows: (A) AD is a right versus responsibility, (B) past medical experiences influence ACP engagement, (C) ACP requires relationship-centered decision support, (D) concerns for care after death, and (E) suggestions for improving ACP experiences. Participants wished to engage in a relationship-centered approach to ACP, yet voiced hesitation due to experiences of significant medical bias and mistreatment, typically surrounding judgments of their quality of life.Better health professional training in ACP and heightened awareness of the unique ACP considerations pertaining to people with disabilities are recommended. |
| Databáze: | OpenAIRE |
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