Karla T Washington1, Klaudia Kukulka1, Raghav Govindarjan2, David R Mehr1. 1. Department of Family and Community Medicine, School of Medicine, University of Missouri, Columbia, MO, USA. 2. Department of Neurology, School of Medicine, University of Missouri, Columbia, MO, USA.
Abstract
Objective: To describe key stakeholders' perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders' general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care's definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.
Objective: To describe key stakeholders' perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders' general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care's definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.
Authors: Melissa D Aldridge; Jeroen Hasselaar; Eduardo Garralda; Marlieke van der Eerden; David Stevenson; Karen McKendrick; Carlos Centeno; Diane E Meier Journal: Palliat Med Date: 2015-09-24 Impact factor: 4.762
Authors: Peter M Andersen; Sharon Abrahams; Gian D Borasio; Mamede de Carvalho; Adriano Chio; Philip Van Damme; Orla Hardiman; Katja Kollewe; Karen E Morrison; Susanne Petri; Pierre-Francois Pradat; Vincenzo Silani; Barbara Tomik; Maria Wasner; Markus Weber Journal: Eur J Neurol Date: 2011-09-14 Impact factor: 6.089
Authors: Peter Bede; David Oliver; James Stodart; Leonard van den Berg; Zachary Simmons; Doiminic O Brannagáin; Gian Domenico Borasio; Orla Hardiman Journal: J Neurol Neurosurg Psychiatry Date: 2011-02-05 Impact factor: 10.154