An exploration into the experiences of Parkinson’s disease and its relationship with emotional well-being

Parkinson’s disease (PD) is estimated to affect one person in every 800, it is a condition that affects physical appearance and individuals can experience a wide range of psychological symptoms. No previous research has directly explored visible difference or associated psychological difficulties within PD, despite research existing for other chronic health conditions. Literature Review: Using a meta-ethnographic approach, the literature review examined twelve qualitative studies exploring individuals’ experiences of PD. Seven third order constructs, grouped under four overarching main themes were identified. Individuals experienced uncertainty in adjustment and coping, and associated emotional challenges of living with PD. A sense of being trapped was reported and living with the disease undermined spontaneity, as life was constrained by routines in drug regimens and relentlessly planned activities. The review demonstrated an understanding of the lived experience of PD and highlighted the psychological demands of living with the disease. The review also indicated that specific experiences of PD were under-reported and highlighted the need for further research. Empirical study: The empirical study explored shame (general, external and body), psychological morbidity (anxiety, depression, social anxiety and fear of negative evaluation), quality of life and body image disturbance in individuals with PD. The findings demonstrated that participants experienced higher levels of general shame and body image disturbances compared to non-clinical populations and significant associations between shame and psychological morbidity were found. It was found that participants quantitatively reported low levels of shame (external and body), fear of negative evaluation and social anxiety but qualitatively expressed embarrassment, self-consciousness and associated concealment and avoidance behaviours in relation to PD symptoms. It was suggested that open-ended questions may have facilitated participants to share their experiences in comparison to responding to quantitative self-report measures alone. Interpretations of the findings, clinical implications and suggestions for future research were discussed.