Sage Palliative Medicine & Chronic Care

Balancing present-moment acceptance and future concerns: A qualitative study of illness experiences and perceptions of palliative care in progressive neurological diseases

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Sinopsis

This episode features Lily Man Lee Chan (School of Nursing, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR).   What is already known about the topic?   Progressive neurologic diseases involve complex, fluctuating symptoms and function decline. Palliative care aims to improve quality of life and symptom control. Access to palliative services is often limited to advanced disease stages or based on prognosis. Palliative care needs among people with progressive neurological diseases are understudied in Asian contexts.   What this paper adds? People with progressive neurological diseases experience significant palliative care needs related to physical, psychosocial, and spiritual concerns from the early stages of illness, highlighting the necessity of early palliative care based on individual needs rather than prognosis. Patients with progressive neurological diseases navigated complex psychospiritual distress, transitioning from negativity to life renegotiation by fostering a