Life Experiences of Informal Caregivers of Parkinson Disease Patients: A Qualitative Study

Abstract

Parkinson's disease is a progressive neurodegenerative disorder that causes motor deficits (tremors, stiffness, bradykinesia, and postural instability). Everyone's experience with Parkinson's disease is unique however, many people living with this disease suffer different challenges and problems. Informal caregivers play a major role in the lives of patients suffering from Parkinson’s disease. Caregiving is seen as the role and responsibility of the caregiver, which emphasizes the significant toll on their mental and physical health. This study investigates the experiences of informal caregivers of Parkinson’s Disease patients through the Interpretative Phenomenological Approach. Using purposive sampling, the data was collected from five participants from different parts of Kerala through support groups. The data collection method adopted was a semi-structured interview conducted online where the responses were recorded and analyzed by thematic analysis. The findings of this study indicate that caregivers' experiences and challenges are critical to providing better quality care to Parkinson's disease patients and addressing caregiver needs. This research paper extensively discusses the identified themes during the process of research and elaborates on the experiences of the informal caregivers of Parkinson’s patients. The paper also suggests future directions for further research in the area and its limitations and recommendations also have been discussed.