Paediatrics Publications
Challenges facing palliative neurology practice: A qualitative analysis
Document Type
Article
Publication Date
2-15-2018
Journal
Journal of the Neurological Sciences
Volume
385
First Page
225
Last Page
231
URL with Digital Object Identifier
https://doi.org/10.1016/j.jns.2017.12.008
Abstract
Purpose
This study aimed to develop a conceptual understanding of the specific characteristics of palliative care in neurology and the challenges of providing palliative care in the setting of neurological illness.
Method
The study was conducted at London Health Sciences Centre in Canada using grounded theory methodology. Qualitative thematic analysis was applied to focus group (health care providers physicians, nursing, allied health, trainees) and semi-structured interview (patient-caregiver dyads) data to explore challenges facing the delivery of palliative care in neurology.
Results
Specific characteristics of neurological disease that affect palliative care in neurology were identified: 1) timelines of disease progression, 2) barriers to communication arising from neurologic disease, 3) variability across disease progression, and 4) threat to personhood arising from functional and cognitive impairments related to neurologic disease. Moreover, three key challenges that shaped and complicated palliative care in neurology were identified: 1) uncertainty with respect to prognosis, support availability and disease trajectory, 2) inconsistency in information, attitudes and skills among care providers, care teams, caregivers and families, and 3) existential distress specific to neurological disease, including emotional, psychological and spiritual distress resulting from loss of function, autonomy and death. These challenges were experienced across groups, but manifested themselves in different ways for each group.
Conclusions
Further research regarding prognosis, improved identification of patients with palliative care needs, developing an approach to palliative care delivery within neurology and the creation of more robust educational resources for teaching palliative neurology are expected to improve neurologists' comfort with palliative care, thereby enhancing care delivery in neurology.
Notes
Article available at Journal of the Neurological Sciences, Vol. 385.
https://doi.org/10.1016/j.jns.2017.12.008
© 2017 Elsevier B.V. All rights reserved.