The Levels and Associated Factors for Participation and Autonomy Among People with Parkinson´s Disease: A Cross-Sectional Study

Tingting Zhang,1,&ast; Lan Yao,1,&ast; Tao Li,2 Haoxin Tian,3 Guirong Song4 1Nursing Department, the First Hospital Affiliated to Dalian Medical University, Dalian, People’s Republic of China; 2Department of Neurology, the First Hospital Affiliated to Dalian Medical University, Dalian, People’s Republic of China; 3The First Clinical College, Dalian Medical University, Dalian, People’s Republic of China; 4Department of Health Statistics, School of Public Health, Dalian Medical University, Dalian, People’s Republic of China&ast;These authors contributed equally to this workCorrespondence: Guirong Song, Email songsara2016@dmu.edu.cnBackground: Promoting participation and autonomy (PA) in society has been highlighted as an ultimate goal of rehabilitation for people with chronic diseases by the World Health Organization, but few studies have focused on PA in people with Parkinson’s disease (PD). Therefore, this study aimed to determine the level of PA in PD patients and investigate the associated psychological and behavioural factors.Methods: PD patients were recruited from the Department of Neurology of the First Hospital Affiliated with Dalian Medical University using convenience sampling for this cross-sectional study. A questionnaire covering social-demographic and disease-related characteristics, Chinese version of Impact on Participation and Autonomy (IPA) Questionnaire, Connor-Davidson Resilience Scale (CD-RISC), Self-rating Depression Scale (SDS), Self-rating Anxiety Scale (SAS), Medical Coping Modes Questionnaire (MCMQ), Social Support Rating Scale (SSRS), Hoehn-Yahr Staging System and Unified Parkinson’s Disease Rating Scale (UPDRS) were used for investigation. A multivariate stepwise linear regression analysis was used to determine the factors that influence IPA.Results: A total of 326 PD patients responded to all the questionnaires. The patients had a mean IPA score of 46.6 (SD 21.79). Multiple linear regression analyses revealed that UPDRS II (β = 0.35, p < 0.001) had the strongest correlation with IPA, followed by tenacity, which was the second strongest factor (β = − 0.25, p < 0.001). Hoehn-Yahr stage (β = 0.19, p < 0.001) and availability of social support (β =− 0.12, p =0.001) were also strong factors.Conclusion: The average level of PA among PD patients was at the lower middle-level. Among PD patients, physical function, psychological resilience and social support were the strongest factors associated with PA. These findings provide valuable insights into PD patients’ PA and can help medical professionals identify the early risks of restricted PA among PD patients, implement interventions to promote PA and ultimately achieve rehabilitation.Keywords: participation and autonomy, psychological resilience, social support, Parkinson’s disease, medical coping modes