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

Abstract

Background:

Palliative care is advocated for improving quality of life and symptom control in people with progressive neurological diseases. However, most research has been conducted in Western culture, leaving a gap in Asian contexts. Understanding illness experience and perceived needs is essential for developing culturally tailored palliative interventions.

Aim:

To explore the lived experience of people with progressive neurological diseases in Hong Kong and their perceptions of palliative care.

Design:

Qualitative study using an interpretive description approach and thematic analysis.

Setting/participants:

Twenty-five patients (10 Parkinson’s disease; 15 multiple sclerosis) were interviewed from August to October 2022.

Results:

Four themes were identified: (1) struggles with “invisible pain”: living with unpredictability and uncontrollability; (2) renegotiating life amid progressive loss of functions; (3) a desire for person-centered holistic care, and (4) dilemmas in future care planning amid limited awareness of palliative care. Participants experienced profound psychospiritual distress, disrupted self-identity, and social disconnection. While seeking acceptance and a positive outlook, they felt their holistic needs were overlooked by a healthcare system focused mainly on physical symptoms. Most were unfamiliar with palliative care, viewing it as irrelevant to progressive neurological diseases, yet desired compassionate, whole-person care, including psychospiritual support. Despite recognizing the need for future care planning before cognitive decline, barriers including emotional burden, family reluctance, and limited information impeded open discussions.

Conclusions:

Progressive neurological diseases significantly affect psychospiritual and social wellbeing. A person-centered, symptom-based palliative care approach, tailored to the fluctuating trajectory of progressive neurological diseases, is essential to address these multidimensional needs.