Neuropalliative care for Parkinson’s disease in India: a qualitative exploration of healthcare professionals’ perspectives

Abstract

Introduction: The prevalence of Parkinson’s disease (PD) in India is roughly 10% of the global burden, which is a considerable public health concern. The burden on healthcare services in India is substantial due to the variations in PD prevalence and the country’s large population. The unique cultural, ethnic, and social differences in India give rise to distinct needs among PD patients and their caregivers. Neuropalliative care (NPC) is an emerging subspecialty with a holistic approach that requires a unique skill set and the involvement of allied healthcare professionals who play a crucial role in providing integrated services. Aim: The objective of this study is to explore the experiences and perspectives of the primary and allied healthcare professionals working with persons with PD in India. Methods: The current study employed a qualitative, exploratory, inductive research design, using in-depth interviews with 15 primary and allied healthcare professionals who had more than 5 years of experience working with persons with PD. Participants worked in varied settings such as academic hospitals, rehabilitation services, and tertiary care hospitals. Results: The mean years of work experience for the participants were 7.5 ± 3.26 years with a mean number of 30.8 ± 14.8 patients with PD per month. Thematic analysis of the data revealed 5 main themes and 20 subthemes. The major themes revealed were understanding of NPC, the needs of patients and caregivers of PD, barriers and challenges, interventions for patients and caregivers, facilitators, and components of NPC for PD. Conclusion: To provide a structured stepped-care approach to managing PD, there is a need to understand the psychosocial and palliative care aspects of PD in patients and caregivers in the Indian context. Adequate training and resource allocation are needed for NPC to be adopted in clinical care.