Social Interactions and Comprehensive Education Programs: What the Society Related to Parkinson's Disease Wants in the Context of Iran: Content Analysis and Delphi Approach

Abstract

Background: The physical and psychological symptoms of Parkinson's disease can disrupt patients' social lives, leading them to withdraw from social situations. Objectives: The objective of the present study is to identify the social needs and priorities of patients with Parkinson's disease from the perspectives of patients, family caregivers, and health care providers. Methods: The present study employed a qualitative content analysis method to collect data to identify the needs of patients with Parkinson's disease. Semi-structured interviews were conducted with 28 participants using a purposive sampling strategy with maximum diversity in Tehran in 2023. Data analysis was performed using the conventional content analysis approach based on Granheim and Lundman's model. A two-stage Delphi technique was used to identify patients' priorities with 53 participants. Results: The 28 participants included 11 patients (7 male, 4 female, mean age = 66.27), 11 family caregivers (7 daughters, 3 spouses, 1 son, mean age = 43.81), 4 nurses, and 2 physicians. Three main categories and 12 subcategories were extracted. In the category of "Interactionism by leaving unwanted isolation," the subcategories identified were maintaining and promoting social interactions, maintaining aspects of the job and continuing some professional skills, voluntary membership in groups and institutional participation, and participation in social activities. The category "Continuity of healthcare services delivery" included four subcategories: Continued access to movement disorder specialists, access to coordinated multidisciplinary services, access to supporting organizations and associations, and appropriate insurance coverage. The category "Individual-oriented and community-oriented advocacy programs" included four subcategories: Financial support, social belonging and effective communication, self-care, and comprehensive education programs with multiple target groups. The prioritization was completed after two Delphi steps with a high agreement of 86.90% from 16 patients, 14 family caregivers, and 23 health care providers from eight disciplines. Conclusions: The results of the study show that patients with Parkinson's disease experience various social needs. Since the nature of Parkinson's disease affects social interactions, patients and their caregivers view social interactions as the missing link to addressing their social needs. Meanwhile, health care providers prioritize educating patients and families and holding specialized Parkinson's disease courses. Policymakers should consider necessary social support programs for these patients and focus on the specialized training of healthcare providers in the field of Parkinson's disease, in addition to providing appropriate care, support, and social services.