Palliative care for patients with Parkinson's disease: study protocol for a mixed methods study

Area of Science:

• Neurology
• Palliative Care
• Quality of Life Research

Background:

• Parkinson's disease (PD) is a progressive neurological disorder impacting patients and caregivers.
• Palliative care is recommended but faces challenges in PD due to unclear transition markers and limited evidence on effective interventions.
• Understanding palliative care needs in PD is crucial for improving patient and caregiver outcomes.

Purpose of the Study:

• To examine the experiences of patients, (bereaved) family caregivers, and healthcare professionals regarding palliative care in Parkinson's disease.
• To identify specific palliative care needs and challenges faced by individuals with PD and their support network.
• To gather insights for improving the quality of life and end-of-life care for PD patients.

Main Methods:

• A mixed-methods study combining retrospective and prospective phases.
• Phase 1: Individual and focus group interviews with bereaved family caregivers and professionals.
• Phase 2: Longitudinal follow-up of PD patients and their caregivers (8-12 months) using interviews and questionnaires.

Main Results:

• Data collection will capture Quality of Life, Quality of Care, symptom perception, caregiver burden, and professional collaboration.
• Qualitative data will be analyzed using Computer-Assisted Qualitative Data Analysis Software (CAQDAS).
• Bereavement interviews will be conducted with family caregivers if patients pass away during the study.

Conclusions:

• The study will provide a comprehensive perspective on palliative care in PD.
• Results will inform the development of a tailored palliative care protocol for PD patients.
• Findings will establish a foundation for future intervention research in PD palliative care.