Understanding Psychosocial Functioning, Caregiver Burden, and Neuropalliative Care in Parkinson’s Disease – A Mixed-Methods Study

Abstract

Background: Despite advancements in treatment, patients with Parkinson’s disease (PD) experience a range of symptoms that affect their quality of life. There is a need to integrate neuropalliative care into standard care. The aim of the study is to understand the psychosocial functioning in persons with PD and explore their caregivers’ burden. Methods: The study utilizes a mixed-methods design where 50 patient–caregiver dyads attending the outpatient services of the movement disorder clinic at a tertiary care hospital were measured on psychosocial functioning and caregiver burden and palliative care outcomes for a period of 6 months. Focus group discussions were conducted with 18 patient–caregiver dyads to understand the needs of palliative care. Results: It was found that caregiver burden was positively correlated with palliative care outcomes scores of patients (r = 0.586) and caregivers (r = 0.675) and psychosocial functioning was positively correlated with palliative care outcomes of patients (r = 0.708). The psychosocial functioning score was higher among female patients (indicating worse functioning) than males, and female caregivers experienced significantly higher caregiver burden. The qualitative findings reveal that there is a substantial gap in awareness about palliative care, lack of information, presence of stigmatizing beliefs, and lack of adequate accessibility to palliative facilities. Conclusion: The study lays the foundation for future PD neuropalliative care research, guiding interventions, and exploration of regional variations in PD experiences in India. There is a need to address caregiver burden in PD in India.