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

Abstract

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. 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. 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. 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.