TY - JOUR
T1 - Engaging Specialist Palliative Care in the Management of Amyotrophic Lateral Sclerosis
T2 - A Patient-, Family-, and Provider-Based Approach
AU - Washington, Karla T.
AU - Kukulka, Klaudia
AU - Govindarjan, Raghav
AU - Mehr, David R.
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this work was supported by the Agency for Healthcare Research and Quality (AHRQ) under [Grant Number R24HS022140]. The content is solely the responsibility of the authors and does not necessarily represent the official views of AHRQ.
Publisher Copyright:
© The Author(s) 2020.
PY - 2022/4
Y1 - 2022/4
N2 - 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.
AB - 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.
KW - amyotrophic lateral sclerosis
KW - integration
KW - palliative care
KW - qualitative research
KW - serious illness care
UR - http://www.scopus.com/inward/record.url?scp=85081627970&partnerID=8YFLogxK
U2 - 10.1177/0825859719895827
DO - 10.1177/0825859719895827
M3 - Article
C2 - 32066316
AN - SCOPUS:85081627970
SN - 0825-8597
VL - 37
SP - 170
EP - 176
JO - Journal of Palliative Care
JF - Journal of Palliative Care
IS - 2
ER -